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Tuesday, November 8, 2005 7:29 AM CST
This is my last post and it’s a long one too. Sarah’s birthday was extremely hard without her. Halloween wasn’t quite as bad as her birthday but more hard than a regular hard day. The four of us have had some good days together. However, after every good time comes a wave of grief. I don’t feel guilty for enjoying life, but when the moment is over and I reflect back on it, I always think about how much better it would have been if Sarah were there too and this leads to very sad feelings. Most of the time I’m just going through the motions of life by doing things because I know I should and that at one time I use to enjoy it. My sadness will be with me forever, but my goal is to not let it lead me through life. I’m working on that and it takes a lot of energy. There are still memories of Sarah’s last year that haunt me. Like her hair falling out and the look on her face; holding her down to get that first IV and later for numerous blood draws; throwing up after shunt surgery when she hadn’t eaten in 24 hours; seeing her in pain and just laying around all day; and watching her die without being able to do anything about it. These memories have to be sorted and put to rest. Somehow I have to come to peace with them. The frustrating part is that they overshadow the good memories and my ability to enjoy life now.
The pain is still with me and I know it always will be. It hasn’t gotten any easier and in some ways its worse than the few months after she died. Even on good days, I have thoughts like, “Sarah would have loved this!” and “I wish Sarah were here too.” Happiness and sadness exist together in me. We are taught they are opposites and either you are happy or sad. I had to change my perspective of happy and sad as well as accept that I feel both at the same time and that is how it’s going to be. There are lots of things to get use to besides Sarah being dead. It changed all of us so much and our life perspective is different than before she was diagnosed. I’m worried about the one year anniversary of her death. There is some comfort in knowing that this time last year, Sarah was here and that won’t be true after February 21st. I’m sure it will be yet another adjustment and more grief. I have heard that the second year can be worse than the first and wonder how can anything be worse.
I hope that through all this I have been kind to everyone. I know that sometimes my patience isn’t what it should be. I really feel that no matter what life brings your way, you should be kind and considerate to others. I’ll admit it can be challenging. At times I find it hard to be sympathetic to other people’s situations. I know that I withdraw a lot and that is usually because I feel nothing but negativity will come out of my mouth. I’m trying to be kind by being quiet but I realize it may seem otherwise. We all have regrets and there is one I want to share. I wish I had been more forthcoming about Sarah’s diagnosis. I can honestly say that when I saw her first MRI and how big the tumor was compared to the rest of her brain, I knew it was unlikely she would live long-term and if she did it would be with deficits. However, I didn’t really share this with everyone around us. I don’t think I ever gave the impression that she was going to recover completely but I didn’t really make it clear. I have heard from many people how surprised they were when she was suddenly in hospice and not attending school. I just figured that everyone knew that a brain tumor is life threatening and more people die from them than survive them. I regret this because I know Sarah’s death affected a lot of children and perhaps they would have been better prepared had I communicated to everyone the seriousness of her condition. I know that Sarah looked great after surgery and tolerated treatment very well. However, once the tumor started progressing it went quickly because there was very little room in her brain for any growth.
I know that we all have our religious beliefs and we all go through times when we may question our beliefs, but I know one thing for sure, and that is we all have this Earth in common and we are all stuck living on it together. I wish everyone would treat it as the wonderful and precious gift it is. It is the only one we have and we are much more dependent on it than we acknowledge. The Earth is life giving, without it there is no life. I don’t feel good when I think about the things being done to it and the mess that will be left to future generations. I’m always trying to practice better recycling and more importantly, not to over consume. I’m amazed that the thrift shops will refuse donations because they have too much stuff. I wish we lived in a culture where having stuff wasn’t so important, it would be good for the Earth and our bank accounts. Of course, there is a balance to everything and I know it’s hard to agree on what that balance is, but I hope all of you will try your best to take care of our world. I feel strongly about this because Sarah was born in Alamogordo, NM which is near Holloman AFB. This is also near where the first atom bomb was tested. A lot of cancers, brain and others, are clustered around military installations and we know they haven’t been very kind to Earth. I don’t think it takes a rocket scientist or a government study to see that in many cancer cases, there is a correlation between the state of the environment and the number of cancer patients in the area.
I think a lot of people want to believe that modern medicine can cure most cancers and other chronic disease. That isn’t true. Treating a lot of cancers is trial and error. The standard treatment is radiation and chemotherapy. These have been very valuable treatments for many people, but for many more it wasn’t successful. Government funding for new treatments is very political. Clinical trials though valuable, need some overhauling. Sarah was in a clinical trial and all her data was disqualified because she didn’t receive her last Temodar cycle required by the trial. We chose not to give her the last cycle because the tumor was progressing. Temodar wasn’t effective against Sarah’s tumor and this will not be reflected in the result of the clinical trial. Some of the new chemotherapies look to be very hopeful and they might be, but it sure would be nice if there could be more research into the immune system and find out why some people’s bodies allow cancer to grow. Maybe they would discover how to use the immune system to rid the body of the cancer instead of poisoning the whole body in hopes of killing the cancer cells. My point is that there is a lot we don’t know about our bodies and even with what we do know, each person is an individual and won’t necessarily respond to treatment as expected. Medical research is under funded. We don’t think medical research is overly important until we are faced with a medical crisis of our own or someone we love. I ask that all of you be more aware of this need. Any kind of medical research helps all of us, so support the field close to your heart. If you know someone with a specific condition, then support that one. I know that stem cell research is controversial but I wonder if those strongly against it have watched a loved one suffer and die. Stem cell research may seem more promising for some diseases than others, but the knowledge learned may lead to other valuable discoveries about the body. A lot of the research being done is by the pharmaceutical companies. Their research has contributed a lot to our knowledge but there is more to be learned that may not be profitable to anyone and might save someone’s life.
Thanks for caring enough about Sarah and the rest of us to follow our journey. I know it hasn’t ended yet but I’m hopeful it is headed somewhere good. The five of us took a nightmare trip through brain tumor land and we left without Sarah’s physical being, but she will always be in all of our hearts and we will always love her. I never imagined we would experience this and even as I say that, I know everyone who has something bad happen to them, says that. We have a lot of choices in our lives, but sometimes all we have is the choice of how to react to what life brings. I’m not happy about what we got but I choose to accept it and make it part of me so that I can move forward and make room for the potential good times. I will look back often, but I will be facing forward when I do knowing that after living through hell there has to be better times ahead. That would be hope, and yes I still have it, even on my worse days.
I wish you all good health and may you find joy in every day you are lucky to have. Please don’t forget the life lessons Sarah’s short life and death have shown you and that lots of kids and adults are dying a horrible death from cancer.
With lots of love,
Jennifer
P.S. On December 11th (always the second Sunday of December), Compassionate Friends is holding a candle lighting in memory of all children who have died of any cause. Check out the Compassionate Friends link by copying it to your browser: www.compassionatefriends.org/2005_WWCL/worldwide_candle_lighting_inform.htm
Also, Candlelighters is decorating the National Childhood Cancer Awareness Tree in Washington D.C. at the Old Post Office Pavilion in honor and in memory of all cancer kids. The tree is decorated with gold ribbons printed with the names of the cancer kids. To have a ribbon put on the tree go to the Candlelighters 2005 Tree link by copying it to your browser: www.candlelighters.org/cancerawarenesstree2005.stm
Garden update: It isn’t done because I’m waiting for plants to come in. I posted pictures.
Friday, September 23, 2005 1:58 PM CDT
Well we have made it through Sarah’s birthday. I honestly couldn’t see past it because I couldn’t see how I was going to get through it. But I did and it is more proof that life keeps going and the world keeps spinning. The pain of her absence is extreme but more so on her birthday. I usually don’t go the whole “why did this happen?” route of thinking for I know that question will never be answered. Life happens and that is all there is to it. However, those thoughts came on her birthday. How could a child I gave birth to just eight years ago not be here on her birthday? I know I should still celebrate her birth without her for I would do it all again, but in reality it was an extremely sad day. I grieved for all the moments I don’t get to have with her and for all the dreams that will never come true.
We buried her ashes in the garden under Buttercup and that seems to bring us some peace. We enclosed her ashes in a container and included some of her personal items. We put her “It’s My Birthday” button from the cruise since it was her birthday; a small Pikachu; a red-white-and-blue rubber ball (she had lots of balls); a key chain with her name on it that looked like a New Mexico license plate (she collected key chains and was born in NM); letters we wrote to her; a name tag she made for herself and on the back we wrote “We (heart) U” with her birth date and year she died and then we all signed it; a necklace she made for herself; a little Lego ship she put together; and finally Pet’s remains all in with her remains. It was tough seeing those ashes and thinking about the first time I saw her. It is humbling to see a human being reduced to a small bag of ashes and to know that this was my Sarah I love so much.
Marco, Keith and Jenna all stayed home and it was good to be together after I had been gone to California. They put down mulch in the garden while I was gone and it looks good. The butterfly garden has four different caterpillars; Gulf Fritillary on the passion vine, Monarchs and Queens on the milkweed, and Black Swallowtails on the dill. I will have to adopt some out because I don’t think I will have enough plant to feed them, especially the Black Swallowtails.
Thank you to everyone who sent notes and e-mails. I didn’t feel much like talking but it is nice to know you were thinking of us and Sarah too.
Love, Jennifer
Tuesday, September 13, 2005 6:04 PM CDT
I changed the photos. There is a picture of Sarah's tree planted in her memory at Lewis Carroll. There is also a picture of a rocking chair donated by a great group of friends and painted by SueHa. Thanks girls! Sue you did a fabulous job! Sue painted Buttercup on the seat of the chair. Buttercup is from a series of eight books called Pixie Tricks. These were originally Jenna's and last fall Marco and I started reading them to Sarah. She loved them. Buttercup gave people the hiccups. Sarah seemed to get the hiccups often and we would ask her where Buttercup was and this would always make her giggle. The statue in the butterfly garden looks like Buttercup. My friend gave her to us for the garden not even knowing the Buttercup story. We already knew that we would bury Sarah's ashes under a statue and Buttercup is perfect. Buttercup sits in the middle of the heart shaped planter staring out at the pond. We will bury Sarah's ashes under Buttercup on Sarah's birthday.
I have made progress on the garden. However, I'm still looking for specific plants and need to work on the drip system. I will be out of town this weekend so Marco, Keith and Jenna will lay the mulch while I'm gone. I return Monday evening so I will not be able to completely finish it before her birthday. I will post pictures when I do.
I am thinking of ending this website. I had thought of keeping it through the first year. I have many reasons I want to do this and yet I have a few to keep it going. I know that everyone who has helped us through like to know how we are doing. I myself have a long list of websites I check at least once a week of other brain tumor kids and the websites of other brain tumor angels. However, the website is no longer a benefit to me. Everyone remembers their children in different ways and some choose to keep a website in memory of their child. I remember Sarah how I remember her and that is different from how everyone else who loved Sarah will remember her. It takes a lot of energy to memorialize someone on a continuous basis and its energy I want to put into my family. Sarah will never be forgotten and I am at peace with that.
Honestly, aren't you tired of hearing how sad and painful losing Sarah is? I don't think it will ever go away. I'm living with missing her everyday and I'm sure all of you know that. Lots of little things set me off, but do you really want to hear about it? I'll probably post a couple more times and show you pictures of the garden. I'll tell you when its the last time so you can clean up your favorites list.
Love, Jennifer
Tuesday, September 6, 2005 5:44 AM CDT
Hello,
We worked on Sarah's butterfly garden this weekend. The sprinklers are in and I hope to get plants today or tomorrow. We did lots of other yardwork too and I have the mosquito bites to prove it. Those mosquitos seem to always find that one spot I miss when I spray. They make me crazy. Marco doesn't spray and rarely gets bit. I spray myself until I'm dripping and I still get a bite or two. I think its because I'm so sweet that they all want my blood and not his grumpy blood.
We have been getting through our weeks. Jenna had a rough last week. She misses Sarah. Going to school and riding the bus without Sarah is tough for her sometimes. Jenna's pain breaks my heart even more than it is. I miss Sarah too and it hurts so much I can't even explain it and to know Jenna feels the same way causes me even more pain. When we cry together, I'm not sure if I'm crying with her or for her. Probably a little of both. I know it will come and go and come again.
Keith seems to be doing well. I think being at a different school is good for him. He got his haircut and willingly. Looks good. His birthday is coming up and he will be thirteen. An official teenager! He thinks he is so mature - whatever!
Today is our anniversary. We have been married 19 years. Sometimes its a long time and sometimes it went very fast. Loosing Sarah was never part of our dreams, but I'm glad Marco was there to share the good and bad times. He drives me crazy with his goofy ways, but he really is a wonderful man. I believe he's a keeper.
Love, Jennifer
Monday, August 22, 2005 8:27 AM CDT
It has been six months since Sarah died. The day snuck up on me. I had thought about it a few days before. Yesterday I thought about her a lot but didn't clue into what day it was. I realized this morning it has been six months. I had all kinds of plans to get stuff done around the house but grieving is always a priority. I've been looking at all her pictures and I'm going to watch a video of her reading. When you get sad, it’s best just to give into it because the only way out of it, is through it.
I was grocery shopping yesterday and started thinking about Sarah and what she ate. I was picking out a cantaloupe and couldn't decide whether to buy one or two and decided on one because last time it took us awhile to eat it. This seemed odd to me because usually as soon as I had cut one up, it would be gone. Sarah always ate lots of cantaloupe. Then I realized we didn't have any cinnamon and sugar for toast. I thought about making some more and when I thought about it, I'm the only one who would eat it. Sarah always had cinnamon and sugar on her toast and we were never without it. I think it ran out shortly after she died and I haven't bothered to make more. I have a pasta collection in the pantry. Sarah was big for pasta with Italian dressing and parmesan cheese. I just kept on buying it until I realized why it was piling up.
I'm often surprised about the little things that remind me of Sarah and what I miss about her. It is like an awakening. What we love about each other has nothing to do with the stuff we have. I miss being with her and having her around. I don't miss doing this or that or going here and there. I have fond memories of experiences with her but I don't necessarily miss the experience, it’s the time with her I miss.
Today I am feeling regretful I sent Sarah back to school after her brain surgery. I really wish I would have kept her home and cherished her and the time together. I knew it was very unlikely she would live longer than five years. I guess I sent her back because that was normal for her and straying off the path of normal required me to accept she was dying and I wasn't ready to do that. I could barely live with the chemo pills and her being strapped down for radiation. It was all baby steps to letting her go. You do one thing that is hard, then you do something a little harder and before you know it, your doing what seemed to be impossible before that first step. For instance, we were there in ICU and the nurses are putting an IV in her and I'm thinking I'm going to pass out from the stress of it. An IV in Sarah seemed liked the worse thing ever and a year later, she is dead. OK, so maybe that isn't the most inspiring example of doing something you think impossible. Sort of the pessimistic view of getting through life. Hey, I didn't think I could live without her and whether I like it or not, I keep waking up in the morning. I'm out and about. I'm going through the motions. Taking those baby steps. I know everyone else can too. I think I just gave myself a pep talk. I feel a bit better. I'm going to turn my so far yucky day around and make it turn out alright. I'm pretty sure I already lived through the hardest part.
I posted some new vacation pictures.
Love, Jennifer
Friday, August 12, 2005 4:47 PM CDT
Howdy! We returned last weekend from a two week vacation to Yellowstone National Park. We flew out and stayed in a condo outside the park. We had a wonderful time. We went hiking, horseback riding and white water rafting. Both were lots of fun as well as physically challenging. We loved learning all about the park and seeing the animals. Yellowstone is America's safari. It was good to see mountains again. I miss them so much. Our two little flatlanders loved them too. Though hiking up hill wasn't their favorite activity. The weather was great and a bit cold at times. Coming from Florida, lows in the 40's is downright winter. It was great getting a break from the heat and we adapted quickly to the cooler temperatures. I can't believe it is so HOT here. It can't be healthy.
Keith and Jenna started back to school the Monday after we returned (this past Monday). This wasn't the best planning on my part. The kids came back two hours behind our time zone and we have had some challenging mornings. Now that the week is over, both seem happy with their class/classes. I was a bit stressed for Keith but he seems to have found his way. I can't remember Jr. High being so complicated.
It was hard leaving without Sarah. Once I got there, I did well. We all did. It was nice to remember her with a smile instead of tears. She would have hated this vacation; it wasn't her sort of fun. Sometimes I got sad thinking about how if she hadn't died, we wouldn't be there. Treatment or not, she couldn't have physically kept up with us. Coming home was harder than expected. The reality of my life came flooding back when I saw her pictures and empty room. The first day of school was tough. We always take a first day of school picture and it was hard without her. Seeing Jenna go on the bus alone was very sad. It all takes some getting use to.
I will say that life is getting better. I have very sad days but I know they will pass if I can just get through them. I think I've accepted the grief as part of my life and I know the sadness will come again and often. Just like there will be happy days but no one complains about those. We really had a great time and I wouldn't have thought it possible a couple months ago. When we planned the vacation, we did it because we knew we should. I didn't expect it to be so enjoyable. I feel like we have re-grouped as a family and have new happy memories to remind us we will have more. Jenna and Keith were such a joy on the trip, Marco too.
What is a vacation without pictures? I posted a few on the picture page. I'll change them after a bit because I have LOTS! We tend to be a picture happy family.
Love, Jennifer
Wednesday, July 20, 2005 2:54 PM CDT
Just thought I would update. I know I don't keep in touch with everyone like I use to so I at least should try to update now and then. Our lives have slowed down and there just isn't as much time for e-mailing and phone calls. It doesn't mean I don't think of everyone.
We have been busy hanging out at the beach, various other outings, watching movies and going to birthday parties. Keith, Jenna and I have taken a tile painting class and a watercolor painting class at the library the last two weeks. They both grumbled about going but I enjoyed it. Keith painted a somewhat dark painting. The instructor commented that Keith needed some happy thoughts. That was actually a bit comical to me, if she only knew. It is those sort of moments that remind me that we don't know what is going on in other people's lives even though they appear to be "normal".
Jenna painted her nails blue to match her new retainer. (She is happy to have her braces off.) We all got a good laugh because after she painted them she tripped over her own feet but landed with her hands in the air to save her manicure job. The three of us laughed really hard and it felt good.
This morning I took Keith to the doctors and he has an inner ear infection which is what I was expecting. What I didn’t expect is that I didn’t have to pay my co-pay because I had a credit for Sarah (thanks to reaching catastrophic limits last year). I could tell by the way the office lady told me that she didn’t know Sarah had died. She said it like I was supposed to be super happy I wasn’t paying anything. I noticed I had other credits at different offices and this must be why. I never asked because who cares why I don’t owe money. The bills always seem to find their way to my mailbox later if it is a mistake.
We have been cleaning Sarah's room a little at a time. Jenna seems to be the most attached to her toys but did part with half her stuffed animals. However, she wanted to keep some of them just because she wanted stuffed animals. I asked her to please let them go (Jenna has quite an impressive collection herself). This frustrated her and she cried, "If I died you would probably throw Lindsey away!" Lindsey is her beloved Kola bear. I ran to tell Marco and laughed about it. Jenna usually gets mad at me and says I don't love her and this was a different twist. Whose kids say that? It is a strange place to be with your kids. Death is starting to be familiar to us and some times you just have to laugh about it. I think we are the only ones allowed to laugh about it though. I probably would be horrified if other people treated it with such familiarity that they laughed about it.
Anyway, I went in to talk to Jenna and we cried for awhile. She was missing Sarah and going through her toys really brings that to the surface. Going through Sarah's stuffed animals was interesting. We all had reasons to keep certain ones and then some we were all unanimous about keeping. Jenna and I remembered her first beanie babies that were her favorites, a gopher and a kangaroo with a joey. And we kept her last stuffed animal. She bought a white baby seal from Sea World. We decided to keep Sarah's doll house and all the furniture. That had been put away shortly after Sarah was diagnosed but we can remember her loving it. Jenna and Sarah played a lot with it together.
I found some necklaces Sarah made. They are sweet. She strung them with her name so that when she wears them and looks down she can read her name. It has been sad going through everything but finding the treasures she left behind makes us feel closer to her.
I'm getting use to her not being here. The feeling that I'm forgetting something isn't nagging at me as much. I don't look for three kids at the beach or when we are out. I still think about her a lot but it doesn't bring tears to my eyes as much as it did. Good memories are starting to surface instead of the memories of treatment and her dying. I actually had about two hours the other day that I didn't think about her. It surprised me too. I know it was the first sign that I'm going to get through it.
The heart in the garden is done and looks great. Marco filled it with dirt and that was a hot job. I actually didn't help with the dirt part. Sometimes I get lucky. I need to decide on what I'm going to plant in the garden before I can get the plants. That will probably take a couple weeks because I don't do quick decisions. I have to get some books and read about the plants first. Then I have to find a place that has the plants and buy them. We have some sprinkler work to do too. We aren’t in a hurry. We will have it done by her birthday.
Love, Jennifer
Tuesday, July 5, 2005 6:03 PM CDT
I don't have much to say. Actually I can't think of anything to say. Isn't that weird? I was reading my last post and wanted to change it. It sounded kind of whiney. (I don't think whiney is a real word but you probably get my meaning.)
The garden is making progress. We are working on a heart planter for the middle. Once this is done, we need to bring some dirt in and that is a lot harder than it sounds. In case you don't live in Florida, it is hotter than Hades here. I'm not real excited about hauling dirt around in the heat. Honestly, I prefer to not even venture outside.
So that is it. We are doing a lot of nothing and keeping very busy with it.
Love, Jennifer
Monday, June 27, 2005 2:20 PM CDT
It has been a long time since I've updated. I haven't had very positive thoughts. My life sucks. Isn't that nicely put? I'm sure you all get a sense of that without me saying it. It takes a lot of energy to keep the pain from swallowing me up. Maybe it is because it's summer and lots of lazy days to think about her and how much I miss her. Maybe because she should be here and she isn't and her absence is even more profound with Jenna and Keith home all day. I usually can't wait for my day to end. I hope the next day is better but I don't expect it.
On a more positive note, Keith and Jenna seem to be doing very well. We were attending a program for grieving children and they have already "graduated". I think it was a valuable experience for them and I'm glad I made them go. They make me proud. I took them angry about going and yet they still participated and came away with some valuable coping skills and understanding about their own grief and life in general. I really hate that they are learning such a big life lesson so early, but I would be annoyed if they didn't learn anything from all of this too. Keith is interested in becoming a junior counselor so that is something he will probably pursue. I think its a great idea.
We had great visits with all our company. It was great having little ones around. However, it made me sad because Keith and Jenna are growing up. Without Sarah, our family is older. I think I miss Barney songs a little. It is like I have this other loss to mourn. I can't believe he is going to be in 7th grade. I hate that I missed out on so much of last year. I know I have to start letting him go but I don't want to. I did that with Sarah and I don't want to do it again. I'm not ready but he is. And at the same time I feel sorry for Keith. Being a teenager is hard enough but now he has a clingy mother too. I'm going to try really hard to only smother him when we are at home.
Jenna attended medieval day camp and had a good time. Keith went to boy scout camp for a whole week and thankfully didn't get lost. He did get lots of mosquito bites. Jenna and I made medieval clothes for a doll. That really tested my sewing abilities and my patience. Jenna did a good job for her first sewing experience.
There is probably lots more I could go on about but nothing very exciting. I'm not complaining about it either. Boring is good. I know what I'm making for dinner tonight and for some reason that brings me a small amount of pleasure and seems like a real accomplishment for the day. I look forward to dinner with Marco, Keith and Jenna. A couple weeks ago Jenna got the table ready for dinner. She went all out like Sarah use to and brought out the fake flowers they had made me for past Mother's Days. She even found the name cards Sarah made for each of us. Sarah used them to arrange where we would sit. The cards were there where we always kept them, at the bottom of the napkin basket. We put hers out under the vase of flowers she had made for me. It made me miss her but I was so glad that Jenna did it and we found them.
Love, Jennifer
Saturday, June 4, 2005 7:21 PM CDT
I changed the pictures so thought I would update too. School has been out since before Memorial Day weekend. We are all happy to have this school year behind us. This past week we had family visit from California and are expecting more this coming week. It is great to see family and be able to enjoy our time with them. We still haven't made much progress on Sarah's garden. Grass is out, edging in, and a tree planted but still lots more to do.
It has been a bit over three months since Sarah died. I never would have thought I would go this long without her in my life. I know that the months will turn into years, probably lots of years. That is a painful thought.
I put in some new pictures of Keith and Jenna.
Love, Jennifer
P.S. My sister is participating in the American Cancer Society's Relay for Life in California. The link to her donor page is below.
Wednesday, May 18, 2005 11:37 AM CDT
I miss Sarah.
I miss her bright, beautiful smile.
I miss making cookies with her.
I miss how she painted my toenails different colors.
I miss getting “spa” treatments in the pool.
I miss watching her play restaurant in the pool.
I miss her singing in the car.
I miss dancing with her.
I miss pushing her on the swing.
I miss reading to her and her to me.
I miss watching her make art.
I miss watching her and Marco play games together.
I miss listening to her, Keith and Jenna playing together.
I miss watching Pokemon and Barney with her.
I miss how she always hugged me and kissed me during Barney’s I Love You song.
I miss her waving goodbye and blowing kisses from the school bus.
I miss going to the library and checking out movies.
I miss watching the movies together and eating popcorn.
I miss tucking her in at night with pink blankey.
I miss looking for caterpillars with her.
I miss hearing her sweet voice.
I miss hugging and kissing her.
I miss you tons, Sarah girl.
Saturday, May 14, 2005 8:11 PM CDT
Here is my horoscope from May 12, 2005:
Aquarius (In case you are wondering.): You have a knack for finding the exact perspective that will lead to the most benefits for you and everyone around you. Even painful events can be the most magnificent gifts if they are considered in a constructive perspective.
I cut it out because I couldn’t stop thinking about it. Even got it out of the recycle bin. I laugh because horoscopes are usually so general and can be interpreted to fit almost anyone’s life. This one seemed to speak to me. I think it bothered me because it got me thinking so damn much. Could I take a break from all this thinking and making sense of everything? I really would sleep better. Magnificent gift? I think that is a little extreme at least the magnificent part.
I hate finding the “good” things spun off of Sarah’s death. Does there have to be good things from losing her? That is why my horoscope annoyed me so much. I knew there were some positives but thinking about them is bothersome. Guilt sets in that I can even find one tiny little positive thing about her dying. Now I’m thinking about them. The positives are not comforting. They are more like a small consolation prize. I would really like to have her and give it all back.
I miss her a lot today and I’m annoyed with that horoscope. I don’t feel like finding any good today. I’m having “I can’t believe this happened” kind of day. I want to live it all again with Sarah. Even knowing the ending. I just want to cherish it and memorize it better.
Keith and Jenna went to a day camp today for grieving children. It was great and they seem to be moving through the grief process. But that is what triggered all these feelings and I kept thinking about the horoscope. Taking Keith and Jenna to the day camp and being there for the closing activity wasn’t a picnic. It was a surreal moment and I wondered how I got there. What were the four of us doing there and without Sarah? Why can’t I just worry about what’s for dinner instead of worrying about them dealing with their grief? I’ll even cook the dinner. It wasn’t where I wanted to be and it made me feel very sad because it always comes back to Sarah dying. Our whole world changed when she was diagnosed and it changed again when she died. I’m not happy I didn’t have choice. I’m not happy about having to make the leftover pieces fit back together in a new way.
If you are an Aquarius I hope you can laugh at this one. Who needs painful events? (I’m aware of the “can’t have happy without sad”, let’s not go there.) And if you have a loss of any kind in your life, let me know exactly how you are turning them into “magnificent gifts” by considering them in a constructive perspective. This one should have come with a manual; 10 helpful tips; something. Well, I hope I don’t get anymore of those horoscopes. You know I’ll still be checking it when I get the chance.
Love, Jennifer
P.S. I posted pictures of the butterfly garden at Lewis Carroll. While I was looking for the pictures, I found a video of Sarah I didn't know we had. She is reading Brown Bear, Brown Bear and I cried the whole time. I'm so glad I have it and she is so cute in it. It is from August and she had the book memorized so reading is stretching it.
Monday, May 9, 2005 6:54 AM CDT
Check out this link. It is a wonderful Mother's Day post by the father of Rory: www2.caringbridge.org/il/rory. OK, you have to cut and paste because Caringbridge doesn't let us put links in. I tried but it messed up the entire post. It is worth your effort.
I decided to do an update because I’m feeling relatively good today. I usually write when I’m sad and have to concentrate on breathing. The sadness and pain is always there but some times it stays off to the side. It is like an extra personality to keep in check. We all know about extra personalities, right?
I had a good Mother’s Day. I got a new bike so all four of us can ride together. We never did this before because Sarah never got out of training wheels and wasn’t so stable on the bike with them. We just thought it was taking her a bit longer and being the third child, we weren’t in a big hurry for it to happen. We never thought it was because she had a brain tumor. She got to heavy and big for a bike seat or to pull. Marco usually took them out to ride. Sarah only rode around the block so there never seemed to be a need for another adult bike. Anyway, we went riding and it was fun. It was a gorgeous day. Keith spotted lots of wildlife and we stopped a couple times to look. At dinner, Jenna complained that we stopped too much. Someone always has to complain. I told her that the stopping was compromising because Keith wanted to get off his bike and observe longer. So, he complained about that. I had to tell him we were on a bike ride not a nature safari, get back on the bike. They were both fun despite their moments. Then we went out to lunch and a side trip to Home Depot. Keith wanted to buy some pipe for something he is making, oh, a marshmallow shooter. I think he is going through a GI Joe phase. That is what I get for never letting him play with pretend guns, now he can reason that they are pretend and they are made out of pipes so it’s much harder to say no. That kid has an incredible imagination. Jenna spent most of her spare time painting. She is pretty good. She doesn’t copy anything. She paints out of her head and they look good. Both Keith and Jenna painted me a picture of Sarah for Mother’s Day. They turned out nice but only I, being the mother, would know the pictures are of Sarah. Keep that to yourself. Jenna made me a great book too. She did wonderful pictures, even though my hair looked a little too red. I know it can look a bit red sometimes but not that red. Not that there is anything wrong with red hair.
I’m supposed to be doing laundry. I can’t remember when I did it last so that means it needs to be done. Last night I did a load so they would have shorts to wear to school. I told Jenna if I didn’t do it today we would all have to go naked tomorrow. That made her laugh. I think she would wear dirty clothes before she went to school naked. Now we will probably have naked dreams. Those are so weird. I think they are insecurity dreams. I had a weird vampire dream again last night but it wasn’t a chasing me one which makes it more freaky. I also had a dream I passed a kidney stone. Probably because I have been eating and drinking stuff I shouldn’t and had a thought that if I kept it up, I was going to get a stone. I’m surprised I don’t have more dreams about that, because a kidney stone is one of my most feared things. That and having a brain tumor. My eye was a little swollen this morning and that was the thought that went through my head, "Great, I got a brain tumor now." It’s looking better already. I probably just slept funny and drinking some water might help too. Can you blame me for being a bit hypochondriac? Don’t worry; I’m working on my issues.
Can you believe you just read through all my stupid rambling? You should be glad you aren’t here because I would talk to you a mile a minute, anything to not do laundry, well not anything but a lot of things.
Have a good day!
Love, Jennifer
Friday, May 6, 2005 6:11 AM CDT
I’m missing Sarah so much these last couple days. The grief comes in waves. This one is big. I think it started with the Relay for Life. Writing her name on the “In Memory” bag was painful. As if all that is left of her is her name. Keith found on the remembrance wall where she had tried to write her name and our names last year. He also found where he and Jenna wrote short messages. He cried a lot. That always makes me cry too. It wasn’t comforting that is for sure. It was a reminder that just last year, she was here and so full of life. That was so hard for him to deal with. He remembers them running around and having fun. Obviously they were because I didn’t even know they had the wall last year and that the three of them signed it. Besides all the sad parts, we did have a nice time visiting friends and meeting the pharmacists on the team. I posted some pictures.
A tree has been planted at the school in memory of Sarah. This was done quietly as I wished. I want the tree there but it doesn’t make me very happy. Who wants to plant a tree because their child has died? Not something I was hoping to do in my lifetime. I hope it grows up into a wonderful tree, like Sarah would have. We are going to put a marker on the tree and a border around it. Someday the kids won’t know who Sarah is because they will all grow up and move on. I think about this when I’m thinking about what I want the marker to say. It bothers me that her memory will fade though I know that is natural.
I’m cleaning out the game/art closet in our house. There is a bag in there that we took to doctor appointments. The bag had everything for coloring. I found a small note that said “I (picture of heart) U Mom” and she drew a picture of me. Maybe an early Mother’s Day present? There were also some other nice pictures she had made. Thinking about her note is keeping me awake tonight. I wish I could have good dreams of her, but all my dreams are really nightmares. The nightmares wake me up and then I have insomnia. That’s what happens when you watch too much Buffy the Vampire Slayer. I have lots of available nightmare material in my head. They are stressful dreams. Occasionally there are no monsters and I’m frantically looking for Sarah and sure something horrid has happened to her. I wake-up and something horrid did happen. The nightmares are usually worse than the reality. I guess it is a bit comforting. Sometimes I wake up and think, “Glad it didn’t end like that.”
I can hardly wait for school to end and I’m not the one going. Keith and Jenna are ready to be home. We are having lots of moments of “what’s the point?” I’m not very helpful either because I’m wondering the same thing, but I don’t say it. Instead my bright parent mind tells them if I don’t send them to school a certain number of days the police will come knocking on our door. What happened to getting an education? Or, do you want to be stupid your whole life? I used the police excuse. I bet police officers hate that about parents. It just doesn’t seem important right now and I want them home. Isn’t there plenty of time to learn later? Hopefully my attitude will change with them being home all summer, though summer already looks too short. What happened to school starting after Labor Day? I’m not happy about Keith leaving elementary school and going to Jr. High. Another thing to mourn. Does he have to grow up this year? Jenna is right behind him too.
I’m dreading Mother’s Day. I miss her tons everyday and I’m starting to adjust to her absence but Mother’s Day will magnify it. I’m expecting it to be a bit more painful than a regular day. Last year, I let them drag me to Universal Studios. I had a good time with them so I’m glad I did. Honestly, I don’t care for the parks for lots of reasons and I don’t think they are very fun. But, it was nice to be with my family and that memory stands out the most which is good because I have lots of recent memories of doctor appointments, procedures, and hospital stays. I’m not sure what we are doing this year but I’ll try to keep the grief in check and enjoy the time with Keith and Jenna. I will be very thankful I still have them, that is for sure. They are precious.
Love, Jennifer
P.S. Thank you MOPS for the garden angel. Perfect timing.
Sunday, April 24, 2005 8:31 AM CDT
There is a wonderful butterfly garden at Lewis Carroll. Many volunteers spent their Saturday weeding, planting and spreading mulch. It looks great. Sarah would love it, especially all the garden decorations and the bench. Thank you to the Parker’s for the bench. There is also a birdbath thanks to the generosity of ACE Hardware on Merritt Island. When Melissa started the butterfly garden, I thought she was crazy for making more work, even though it was a good idea. Doesn’t she have enough yard to worry about? Anyway, one day I took Keith, Jenna and Sarah to help her with it. I think it was before school started last year. Sarah had a good time helping with it and running around with the other kids. Her class took me on a tour of the garden this past week. They were so excited about it. There was a Monarch visiting and they looked for butterfly eggs. Several of the boys showed me the bobber-head frog which seemed to be their favorite decoration. Sarah’s class has been so compassionate and caring. Several of them will give me a hug when they see me. It makes me miss her but in a good way. It is good for me to see them moving on and it is what I want for them. Laughing and smiling and all of them trying to sit on that bench at once. I think they are all changed a little bit, but I’m glad to see it isn’t too much.
Butterfly gardening is fun and so easy. Plant milkweed and they will come. Here is my huge butterfly garden tip. If you don’t want milkweed growing everywhere in your yard, take the time to cut off the seed pods before they split open. ACE Hardware is hosting a butterfly gardening class Saturday, April 30th at 9:30 am. I’m not sure if you have to register, so call first if you are interested. ACE also sells live ladybugs. You will get aphids on your milkweed and you can’t spray them because you’ll kill the butterflies (and pollute the Earth), so ladybugs help. After a couple years of using ladybugs, this year I have seen ladybugs in all their life cycle stages in my yard and the aphids have been very tolerable.
The next Relay for Life to support The American Cancer Society will be Saturday, April 30, 2005 at Cocoa Beach Jr./Sr. High School. Sarah will be the honorary captain for The Brevard Association of Pharmacists. (I sort of made the name up because I’m not sure what it is exactly, but they are pharmacists from Brevard County and belong to a professional association.) We got all Sarah's prescriptions from the Merritt Island Walgreens. They were great. I will always remember Greg because he helped us so much in the last week of Sarah’s life. He was so compassionate and had only seen Sarah a couple times. I know he cared even though we didn’t have a close personal relationship. That’s what I will remember about him. Pharmacists have a pretty good idea about your life just from your prescriptions. Greg used it to be helpful in a very professional way. Thanks Greg!
The Relay for Life activities start around 2pm on Saturday and last all through the night. It starts out with a few introductions and the survivors say their name and cancer. Sarah did this last year. She was so cute and Marco announced her name and cancer for her. It really is amazing to see all the people fighting cancer or who have survived. Some are so young and some have had more than one. Then they all do a lap around the track to get the relay started. It is inspiring. Then in the evening they light the luminaries in memory or in honor of those with cancer. They ask for a donation for the luminaries and it’s your choice what you put on it. Last year Sarah had several in honor of her. The different teams compete to see who can raise the most money. They usually have things to do and eat for a small price and it all goes to The American Cancer Society. There is entertainment too. If you have the time, stop by and walk around.
News about us: Keith went to state competition for Future Problem Solvers in Orlando. Even more noteworthy, I chaperoned. It was a busy trip and exhausting. Not only was I with lots of kids in our group, but the hotel was full of them. Did I mention we stayed three nights at the Sheraton by Sea World? I will say that all the students were very well behaved despite their excitement and high energy. They all listened well and usually the first time. That made the trip so much easier because I really have a hard time finding the patience for bratty kids. We also had company from California last week and had a wonderful time. When we go to California, we never have enough time to spend with each person because we have so many people to see, so it really is great when they come here and we have them to ourselves. My nephew and niece are so cute and kids say the funniest things. We had a great visit and I miss them tons already.
Keith has 12 baby toads. We need to work on our cricket raising. Jenna got a “new to her” bedroom set. That means cleaning her room and going through everything. We found several pieces of artwork that Sarah had made her. They were very sweet and I think it was good for both of us. We talked about Sarah and saved the pictures for a scrapbook. Jenna has been sick and I took her to the doctors on Friday. It was very hard to sit and wait to see the doctor because it isn’t something I’m use to doing with Jenna and it made me think of Sarah and miss her a lot. Then I hated it that I spent so much time with Sarah waiting to see doctors instead of doing something we liked. But then again, I would sit to see the doctor with her forever, if it meant I got to see her. Can you see it was a very twisted emotional moment? Jenna saw my tears and got off the table to give me hugs. By the way, she is fine and seems better today.
Existing is easy, living happily takes a lot of work. Finding what truly makes you happy is a big job and then going about changing your habits and working on relationships is even harder. The whole world of grief is so complex. I guess that is why there are lots of books about it. Brain tumor land was so horrible and sometimes I’m glad I’ve crossed the bridge out and at the same time I’m not. As much as I’ve hated it, I’m not sure I wanted to leave it. I’m glad to leave it but not without Sarah. The toll was too high. Well, now I’m in grief world and it isn’t much easier. My whole perspective of the world has changed and readjusting isn’t easy. So many things don’t matter anymore (like the huge cracks in my tile) that still matter to the rest of the world. A good thing I’ve learned from all this is that we all have different perspectives and we all have things going on in our lives that other people don’t know about. Being judgmental and making assumptions is wasted energy. There is nothing wrong with being different from each other. Where would our economy be if people weren’t so trendy and brand oriented? It bothers me to see the importance placed on stuff, but if everyone stopped all at once it wouldn’t be good. See the weird stuff going on in my head. If you don’t get it, don’t even bother trying. I’m just rambling.
Hopefully, I’ll see some of you at the Relay for Life. I think I will take my camera to school and take pictures of the butterfly garden to post. I will try to do that this week but I’m not promising.
Love, Jennifer
P.S. I added pictures of last year's Relay for Life at Cocoa Beach. Click on view photos below.
Saturday, April 9, 2005 9:12 AM CDT
I think its official. I’m growing up. Time is whizzing by at a very fast rate, much faster than when I was younger. I think it is a sign of something. I’m still trying to figure it out. I’m still trying to figure out lots of things. I’m pretty sure that is a sign of growing up too. I know I use to have life mostly figured out so that is what tipped me off to the growing up thing. This week has gone by fast and I’m not sure what I did. I missed Sarah tons that I know. I didn’t have enough time to cry about it either. When I’m super busy, the emotions get bottled up and it becomes even more painful. Busy is good for some people, but not for me. I need time to think about her and all the changes her death has created.
For spring break we went to the mountains of North Carolina. I didn’t want to go for lots of reasons, mostly because I didn’t want to go anywhere without Sarah. It was a tough first time. The first family trip minus Sarah. It snowed one day and that made me sad. She never got to see it snow. Keith and Jenna were excited about it and it was hard to have even a bit of enthusiasm. I really hate that about this whole journey. It is hard really being there when I can’t stop thinking of her and how she would like this or that and how she would have had so much fun with us and us with her. Sometimes I feel so detached. We went on a beautiful hike to the top of the mountain and I really didn’t care what it looked like and all I could think about was that she wasn’t there. I hate cancer and all the power it has. I posted pictures of our trip. Click on view pictures.
Keith and Jenna have sacrificed so much through all this and I think a lot about that. Next to missing her, I obsess about them. I wonder if they see how much of me isn’t there. If they do, do they know I want to be? I worry about Jenna the most. She lost her best friend. Sarah and Jenna were always there for each other, especially when I would get angry with one of them. Sarah would hug Jenna and comfort her after I would scold Jenna. That always made me smile no matter how angry they would make me. I loved that they had each other. It was comforting. I miss that for Jenna. Jenna doesn’t want to go to school anymore. It breaks my heart making her go. I just made one child do things she didn’t want to, its tough doing it again even though it really doesn’t compare.
You know what I hate about the last month of Sarah’s life? I hate that I had to be so strong. I wish I could have told her I never wanted to let her go and that she should stay. I wish I could have shown her how sad I was and that I was going to be miserable without her. I didn’t because I felt like it was my last duty as a mother to make her feel it was OK to leave us. I didn’t want her to be worried about us. I told her that we would always be sad without her but that we would be OK and someday we would be happy again. Easier said than done!
I was thinking about time and how Sarah lived only seven years. Seven years is so short compared to my lifespan, but what an impact it had. We love our babies so much but I was thinking about how much they love us and how unconditional it is. They love us without really knowing us and despite all our dysfunctional ways. Yet we try to mold them into the people we expect them to be and in the process pass on all those dysfunctional ways. That baby love is so perfect and pure. That is what we are all looking for, someone to love us unconditionally. I’ll always have that with Sarah and it warms my heart. I’m going to try and keep it with Keith and Jenna and let them be themselves, of course, themselves with all their manners and civilized ways.
Jenna’s egg never hatched in case you are wondering. Thank goodness! Keith has many tadpoles in various stages of development but none have made it to toads. Not sure what we will do with more toads, but we will worry about that when and if it happens. Jenna’s mouse, Max, is still driving me crazy running on his wheel. Keith’s Romeo and Juliet (the toads) have been busy singing. I wish they would shut up. They drive me crazy with it and what are they talking about anyways? I haven’t had time to work on Sarah’s garden. We do have various stages of ladybugs on one of the milkweeds as well as those bad milkweed bugs which I’m going to make disappear.
Thanks for coming back and checking up on us. Honestly our lives aren’t so bad. We miss her and it isn’t easy getting use to her being gone forever. I know we will get through this OK but a lot of times its hard to take the next breath and get through the next minute. There are moments of disbelief. Sometimes I’m not sure it will get better and we will be happy, but I promised Keith and Jenna it would, so it will. This I can make happen with a little work. So until next time, may all of you find your own happiness.
Love, Jennifer
Thursday, March 24, 2005 8:49 PM CST
Well it has been a month since Sarah died. It seems like just yesterday and yet so long ago too. A lot has been going on. Nothing greatly significant, but life has been happening and without her. I have been having a lot of “I can’t believe this has happened” moments. Some of my greatest pain comes from having put her through treatment and yet she still died. She was so good about all of it and such a trooper, but it breaks my heart that she lived her last year, months and days that way. The deficits from the tumor, surgery, and radiation were more than any person should have to experience. Watching her struggle and now thinking about it, tears me up inside. I was reading Sarah’s journal from school and she wrote, “Perserverace 8-31-04 I tried hard to rit”. Rit is write. Sarah was right handed but after surgery became left handed. It was amazing how well she wrote with her left hand, but it wasn’t easy. She lost so much of her fine motor skills and wrote mostly for school. She loved playing with play dough and coloring, but this stopped as she lost more and more of her right-side control. I couldn’t even entice her to play with play dough the couple weeks before she died. She just wasn’t interested. Her journal with its little pictures is precious and I understand why her teacher kept it for awhile.
I have been drawn to her room when I’m home alone. I like to touch her stuff. The dress she last wore with vomit stains all over it, the necklaces she loved, her bouncy ball collection, her favorite books and mostly her “books” she made. She liked to staple blank copy paper together and make her own books. I found one with pictures she had drawn of us labeled, Mommy, Daddy, Keith and Jenna. There was another with “I (heart) U” on every page colored with different colors and designs. I hope she made it just for me because I really needed it then.
Jenna’s birthday was this week. I went to Target to get her a birthday card the night before and cried the whole time I was picking out her card. I really wanted a good one for Jenna because I want her to know she is as precious to me as Sarah. I’m reading all the cards crying because Sarah isn’t going to get another birthday and I don’t get to do this for her ever again. Two women were picking out cards for a friend and laughing about the cards so I was trying to be very discreet with my crying, but my nose was running so I was very sniffley. I heard them whispering about me. It didn’t bother me in a self-conscious way but made me wonder about my mental stability. But, I wondered about my mental stability before, so what’s new? Who doesn’t? I actually made a decision and picked one. I was so happy when Jenna made a slight comment about her card. If she only knew how hard it was to get it and get a good one…
Jenna’s birthday was pretty good. We all missed Sarah like crazy and it was so different without her. We went out to eat and it was very strange with just four of us. We almost always played musical chairs at dinner time. We would sit but then move around at least once sometimes twice. I realize that had a lot do to with Sarah because she liked taking turns sitting by all of us. It use to make me crazy sometimes, but I miss it now. She use to like decorating the table with the flowers and vases the kids made me and putting out place cards for each of us. The place cards worked well because then she could arrange everyone how she liked without us having to sit down first and then move. It really is the little day to day, mostly insignificant things that make a happy life. I’m glad I got to play musical dinner chairs with my family and have conversations together. Sometimes I wish I hadn’t been so stressed and had paid better attention to all their ramblings. Did I just say that? Don’t tell Keith, he loves to hear himself talk and almost always finishes dinner last.
I hope everyone has a good Spring break. We are looking forward to spending time together. We are still pulling up grass for Sarah’s garden. It is a huge obstacle but we will get it done. I’m really good at it because I’ve pulled lots out already.
Love, Jennifer
P.S. Good morning! I just read what I wrote last night and just want to clarify that I'm not crying all the time. Jenna's b-day was just very difficult without Sarah. And, there are lots of "first" times without Sarah that are difficult. I changed the pictures. Its very hard to pick my favorites so I'll just change them now and then. Caringbridge has asked us not to have links to other Caringbridge sites. If you didn't bookmark a website, e-mail me and I'll send it to you.
Another brain tumor mom e-mailed me and reminded me about something I've been thinking about on and off this week. Here is your chance to see the greatness in my mind. Why is it that crying is such an emotional outlet but leaves you with the biggest headache? I'm crying because by heart is breaking do I have to have a headache too? I hope I didn't disappoint you with my simple-minded thoughts. I have lots more goofy stuff going on in my head and no wonder I don't sleep without a little help.
Sunday, March 13, 2005 7:42 AM CST
We made it through another week. I had a lot of tough moments and missed her more than ever. I closed her savings account at the bank. That was hard as they wanted to know why and then wanted a copy of her death certificate. It was very awkward and uncomfortable and did I mention painful. Then while updating my volunteer status with the school district, I had to list the names of my children attending. It was the first time I had to leave Sarah out. I have two children now, not three and I'm having a hard time downsizing. I baked Sarah's favorite oatmeal/chocolate chip cookies for dinner on Friday and it was so sad without her. Then I found a hot pad with her handprint and name on it. I cried so hard and cried more because I can't remember when and why she gave it to me. I know someone out there from pre-school or Lewis Carroll has a similar one. Let me know. I cried more because I don't remember and feel like I lost a moment with her which starts up all my regrets. Just a note: I know I shouldn't be eating cookies for dinner. This was just a one-time incidence. Marco and the kids were out and ate somewhere. Please don't start making me meals, not that they weren't good. We are eating very well, I promise.
Sarah's hermit crab, Pet, died last weekend. That was sad for all of us. We are going to bury him in the garden we make for Sarah. We had him for five years, which is an extremely long time for a hermit crab in captivity. We are glad it happened after Sarah died. Keith thinks he wanted to be with her. I hope she is being nice to Pet, because sometimes they had a love/hate relationship.
Keith’s first batch of tadpoles died. He was sad and disappointed. He already had plans for the 100 tadpoles. Now we have a second batch of about 25 tadpoles. I hope they make it. It would make him very happy. Keith is camping this weekend with the boy scouts and will come home this morning.
Jenna has a cold. I took her to take her 10 year old pictures. She will be having her birthday this month. We got invited to go horseback riding with a friend. That was lots of fun and it was a perfect day outside. She has had lots of attention lavished on her this weekend and it has been good for all of us. I really missed her this past year. She got some eggs from the stables and is hoping they hatch. She wanted an incubator for her birthday and thought we could turn Sarah’s room into a hen house. That got a good laugh. I’m sure our CC&R’s wouldn’t allow that!
Yesterday, Emerald died. She was fighting a brain tumor that started in her cervical spine. She was diagnosed January 2004 and had a similar tumor as Sarah’s. I will add the link to her website below. The guestbook entries really do help even if you don’t know the person. It is nice to know that others acknowledge the existence of your child and the loss everyone is going through. I don’t need Sarah remembered in grand ways because we all remember her in our own way, but I want the world to remember she died of cancer. I believe there is something we can all do about this, whether donating money to charities, voting for people who support funding research, or just being conscious of the impact you have on this earth from over consuming goods to the chemicals you use in and around your home. (You may consume little or use small amounts of chemicals in comparison to the total world consumption, but the byproducts are huge and accumulative at the factories. Think of all the plastic packaging that is thrown away and the byproducts created just to make the packaging you don’t even use.) Maybe some environmentalists are extreme but I don’t think they are completely wrong. You may live to old age, but there are a lot of children who don’t (and adults too). Some of them who die from cancer are clustered geographically and/or have possible exposure to toxins not acknowledged by the people who left them. I hope that no one has to go through what we went through. Like Emerald’s mom says, “The only thing worse than having cancer, is watching someone you love have cancer.” It is the most helpless feeling. I couldn’t make it better for Sarah and now I can’t make it better for Keith and Jenna. We all suffer from cancer.
Love, Jennifer
P.S. I just read that last paragraph. I know it’s hard to be an environmentally conscious person is this world of STUFF, but just try. Just try harder. We throw away packaging too and occasionally use granules to kill ants. I admit it. Don’t start checking my garbage. I confess!
Saturday, March 5, 2005 5:56 AM CST
I just added pictures of the displays at Sarah's memorial so I thought I would update the journal too.
Marco brought Sarah's remains home yesterday. It brought out a lot of sad emotions. It wasn't easy and I can't exactly explain it. I knew she was dead and that she was being cremated. It just was really sad. For lack of a better place to put her, we put the remains in her room. That seemed the most appropriate place for now. We really haven't decided what we will do with her remains, but we are thinking some ideas over.
As painful as losing Sarah is, we still have good things happening in our lives. Keith is going to state competition with his Future Problem Solvers team. And, his toads laid eggs and we have tiny, tiny tadpoles. This has been very exciting. Also, Keith won the drawing for the book fair at school. Jenna won a shamrock bear from the claw machine at Beef O'Brady's. And, Jenna doesn't have to wear her glasses anymore. She is nearsighted but not enough to make her wear them. She is very happy and so are we because she wanted contacts. And thanks to a caring friend, Keith and Jenna get to go to Toy's R Us for some shopping.
Today we are going to the American Cancer Society's Relay for Life at Merritt Square Mall. There is a Lewis Carroll Team participating. They are called FCAT (Fighting Cancer All Together). Very witty! We will go for a little walking and for the lighting of the luminaries. I expect there will be a few in memory of Sarah. For all you Merritt Island friends, stop by and wander around. Each team does fund raising so if you haven't already sponsored someone, you can help out that way. There seems to be a lot of food. You can walk it off after you eat.
I hope all of you have a good weekend.
Love, Jennifer
Wednesday, March 2, 2005 7:29 AM CST
We made it through a week without Sarah. We miss her so much and it is painful. The memories of hospice are fading and all the wonderful times we had with her are remembered. I have to remind myself that letting her go was best for her. It was a lot easier when I saw her pain and suffering everyday. I worry that she misses me as much as I miss her. I hope not. I hope she is so busy exploring and having fun that she hardly thinks of us. I don’t like thinking that she traded her physical pain for the pain of leaving us.
We were very pleased with her memorial service. Our friends did a fantastic job of planning, organizing and setting-up the service. Lots of people helped out. I’m so thankful for all of you. We had quality time for the four of us after she died thanks to all of you and we didn’t have any worries about the service.
For those of you who did not attend, we held Sarah’s service at the high school auditorium. Pastor Herb Agee spoke and did a wonderful job. Then we watched Sarah’s slide show to her favorite music. Marco and I tried to greet everyone before the service, but I know we missed some of you. We just felt it would be too hard emotionally for Keith, Jenna and us to do it afterwards, so we left right after the show. Pastor Herb did a nice job of providing us with the opportunity for a quick exit.
There were two honor guards from the fire department. They looked great and Sarah would have loved it. We also had a police escort to and from the service. (I admit that was sort of fun.) There was lots of rain on Sunday. Sarah was born on a rainy day so it just made me think of that. There were also displays of Sarah’s pictures and personal items at the service. Her pink blanket, Pet the hermit crab, as well as some of her art work were also on display. I have some pictures of the display that I will try to post.
We privately released butterflies on Monday to remember her. We would have done it Sunday but there was too much rain. We are planning on expanding our butterfly garden for Sarah. Jenna and Keith have already drawn up plans. It will be a good way to memorialize her and keep us busy. Sarah always enjoyed the butterflies. Marco read the above poem before we released them and we think it is relative to Sarah.
I will probably keep Sarah’s site updated occasionally throughout the next year. Please feel free to come back to see how we are doing and check on Sarah’s garden. I will be honest and say that before Sarah’s diagnosis our lives were plain old boring. We liked it that way and are looking forward to finding our way back to boring and uneventful. We enjoy each other’s company (most of the time) and spending time together is our biggest priority. This was important before, but even more so now. Life isn’t a competition; it is about having fulfilling, loving relationships with other people. I think I’ll just leave it at that because I could really expand on that last sentence.
Thank you to everyone who has in some way supported our family. All your prayers; guestbook entries; dinners; words of concern and offers to help; the time spent on her service; flowers, balloons and plants; generous donations; and most of all for being a part of our lives are all appreciated very much. Your generosity will live in our hearts forever.
Love, Jennifer
P.S. I added new links below with pictures of Sarah.
Monday, February 21, 2005 3:28 AM CST
It is with great sadness that I tell you Sarah passed away this morning at 2:50 a.m. She was sleeping when she took her last breath. It seemed peaceful and painless. We will miss her so much and always love her.
Love, Jennifer
Sarah's memorial service will be held at Merritt Island High School at 2:00 p.m., Sunday, February 27, 2005. Sarah's remains will be cremated and there will not be a viewing.
We have given thought to the possibility of children attending and will keep the service relatively short and simple. We would be pleased if Sarah's friends (children and/or adults) attend the service. There will be a slide show of our favorite pictures to some of Sarah's favorite songs. There will also be personal items and pictures on display.
We hope the service will give her family and friends and opportunity to celebrate her life.
Sunday, February 20, 2005 3:07 PM CST
Sarah is still with us. That seems strange to say. Its breaking my heart to see her this way. She seems to be resting comfortably and without pain. She is completely unresponsive. She is getting some bedsores (we are turning her) and her joints are all stiff. Her eyes are sunken in with dark circles. Jenna hasn't gone in to see her since Saturday morning. I told her I know she doesn't look good and she didn't have to see her anymore if she didn't want to. I really don't want her remembering her this way so its OK with me. Keith still goes in and reads to her and watches movies with her (not that she is really watching it).
My Dad is visiting. He reads her stories and talks to her. It is nice to have someone else to share bedside duties. I don't feel so guilty not staying with her all the time.
I'm hoping she will pass soon. I want her to be free of this tumor and the pain.
Love, Jennifer
Wednesday, February 16, 2005 2:50 PM CST
Sarah’s condition remains unchanged. She is still unresponsive and has had no fluids. She appears to be resting comfortably. If you didn’t know, you would think she is asleep.
We are doing OK. I miss her so much already and have my moments. We have started the planning for her memorial service. This has been very hard to do, but I think it will be easier now than when she passes.
Love, Jennifer
Monday, February 14, 2005 3:42 PM CST
Sarah is peacefully resting. Hospice came today and estimates her passing within the next few days. Sarah is unresponsive and bedridden. She hasn’t opened her eyes since Saturday or spoken. She has had no food or water since Friday evening. She is on medication around the clock to keep her comfortable and pain-free.
We have been reading to her and play her favorite videos so that she may listen to them. Saturday we said our goodbyes while she was still opening her eyes. She was sad and frightened about leaving us. We love her so much and it was very hard telling her to leave and to be free of her brain tumor. She looks so precious in her drug induced slumber.
The support and love from the community, family and friends has been very comforting. Thank you for all your generous gifts.
Love, Jennifer
Sunday, February 13, 2005 9:31 AM CST
Last couple days have been rough for Sarah. Yesterday she was vomiting and restless. She is resting comfortably now but is not alert. It was a stressful day.
This past Wednesday, Sarah was visited by a fire truck and firefighters. She really perked up for it and seemed to enjoy herself. The firefighters were great at showing us everything and letting the three of them shoot water from the hose. We also got to ride in it. They brought Sarah her own REAL boots, a REAL firefighting hat, t-shirt, patches and stickers, and a REAL badge. It was exciting for all of us. So a big THANK YOU to all of them and our friends who arranged it for Sarah.
Sarah has also been receiving special deliveries. Keith and Jenna are more excited about them than Sarah. She has a new bear about her size. I named him Mr. Bear for her. We have a pretend Lassie dog that came with balloons that played music. Thanks Chris, she loves GREASE songs. We have gotten lots of wonderful cards, lovely flowers, cookies, candy, and various balloon arrangements. The wonderful dinners keep coming too. I don’t think I’ll ever get a proper thank you out to everyone, but I hope you are all reading this and know that we are VERY appreciative and thankful to be surrounded by so many caring people.
Love, Jennifer
P.S. I’m going to change the pictures today.
Friday, February 4, 2005 1:02 PM CST
We met with Sarah’s team of doctors yesterday. The MRI showed slight progression since the December MRI and significant progression since the October MRI. If they had compared it to her post-surgery MRI, there would be even more progression showing. They offered more Temodar, steroids and eventually another surgery to relieve the fluid build-up in her right lateral ventricle. We have decided not to seek further treatment for her brain tumor. Everything they have to offer would only prolong her life. Sarah is already in pain and we feel more treatment would add to her suffering. We are not willing to continue treatment unless it will cure her. Sarah’s oncologist consulted with the doctors at Duke and St. Judes. We also consulted with Dr. Allen, a pediatric neuro-oncologist, of NYU. Sarah’s doctors supported our decision and will help us phase into hospice.
We have talked to Keith, Jenna and Sarah about her condition and that she isn’t expected to live. We are all preparing for her passing by talking about it, giving lots of love, and shedding lots of tears. Sarah is coming to accept it. She seems the most distressed about leaving us. We have told her we will be fine (though we will love her and miss her forever) and that when she is ready to go, then she should go. We talked with Keith and Jenna last night. Keith stayed home from school today because he was overwhelmed by emotions. He has been reading stories to her and watching TV. Jenna insisted on going to school. She was angry and is withdrawing. I can’t even begin to explain how Marco and I feel. Sometimes it seems so surreal. Never did I expect that I would be in this situation. Mothers aren’t supposed to be there for the deaths of their children. I know it happens, but what are the odds it would happen to us?
As you can imagine, we are not up for much socialization. I have asked my friend, Sharon Burrows, to be our point of contact for anyone with questions or who wishes to see Sarah. Her e-mail is: jsbk@bellsouth.net. We have not discussed with Sarah if she wants visitors or not, but will in the next couple days. We really feel the need to have family time with Sarah and surround her by our love.
Sarah’s walking is very unstable. She has fallen several times. She has also had some episodes of losing bladder control. She has facial paralysis on the right side. Her eyes are not right either. This is hard to describe but they are just off from each other. They seem worse today than they have been. At times, she reminds me of a blind person with the way she just sort of stares off. I know I have been vague about her condition. We really needed some time to ourselves and to clear our minds so that we could decide what is best for Sarah.
We really can’t say how much time Sarah has left. The doctors felt that the Temodar could have been slowing the progression of the tumor. Without it, tumor growth may occur rapidly. She did not come to the appointment with us, so they did not examine her. Once we meet with hospice, they will probably be able to give us a better idea.
I changed the picture to one taken a year ago. I love this picture of her. It was taken about a month after her first surgery last March. This is the Sarah I want to remember. Happy, loving, and a delight. The Sarah I have now is still her lovey self, but she isn’t happy, she is miserable. Her pain is torturing me and no amount of mommy love will make it go away. I will lose her soon to the pain killers. They take away more than her pain and leave us with a shadow of her.
Love, Jennifer
Tuesday, February 1, 2005 8:04 AM CST
Sarah has been showing symptoms of tumor progression. She saw the oncologist last Tuesday (1/25/05) for blood counts (which were fine). We decided to refuse her next scheduled cycle of Temodar based on her symptoms and because the October and December MRI's both showed slight progression. Her doctor got her into MRI within an hour. (FL Hospital has been really good to Sarah.) Then we had to go to the neurosurgeon's office so that her shunt could be reprogrammed. This is non-invasive and done with magnets over the valve of the shunt. Because MRI's are done using a magnetic field, they throw off the settings. Not a big deal, but one more thing to worry about when getting an MRI. Her neurosurgeon looked at her films (I always get copies of her films before I leave.) and the shunt is working. However, it is not into her right lateral ventricle as hoped, but the left lateral ventricle had decreased in size since the last CT scan. Basically, her tumor was in the way when placing the shunt. This means the right lateral ventricle is not draining as it should and will start to build up fluid.
As to what our next step will be, remains to be decided. Her case was taken to tumor board (roundtable of doctors) for review this past Thursday. We will meet with her team of doctors this Thursday to hear what they recommend.
Once we decide what we will do and talk with Keith and Jenna, I will post an update.
Love, Jennifer
P.S. Thank you Lewis Carroll family for all the dinners.
Saturday, January 22, 2005 8:22 PM CST
Sarah is doing the same. She is still home and seems a bit bored but not enough to go to school. We have done a few things here and there, but nothing overly exciting. She likes going to the library and checking out videos.
We did go to Sea World and had a great time. We got to go twice because Sea World was giving ticket holders a second day free. So we went one weekend and wore shorts and the next weekend we froze. Sarah seemed to enjoy both trips. We saw all the shows between both visits. She even touched a stingray. Thanks Liz at Children's Wish Foundation for the tickets.
Keith got his top braces this week. He has had lots of discomfort and isn't eating very well. He had a busy weekend with flag football and boy scouts. Jenna didn't feel sorry for him because she already has braces. She spent today at a girl's engineering workshop. She did lots of neat activities. Sarah and I ran some errands and drove Keith around.
Love, Jennifer
Friday, January 7, 2005 7:45 AM CST
Yesterday I took Sarah for a CT scan. She was complaining of a headache which she had the evening before and just seemed out of sorts. She just finished her Temodar cycle on Tuesday so it all could be from that, but I wanted to be sure. Her CT scan showed that the shunt is fine. They also did x-rays of the shunt down to her belly. She didn't have contrast so all she had to do was lay there and hold still. She is very cooperative. Her neurosurgeon met us at the hospital to look at the films and check the setting of the shunt valve, which was fine. So we decided to watch her and call if her symptoms progress. We also saw the oncologist on Tuesday. Her counts looked good. No news from that visit.
She is now off of kytril for the nausea associated with her chemo cycle and already seems better this morning. Kytril can have its own side effects. Last night during her bath she actually layed down in the water and relaxed for awhile, something she hasn't done in a long time. I also spied her exercising with Dragon Tales this morning. I know these minor things seem silly but for her to do even the smallest "normal" activity is a good sign. And even better, she hasn't vomited since stopping kytril and I haven't seen any hives. She still is very tired and not walking well. I carried her a lot yesterday and now I'm walking funny too. She is definitely growing!
Sarah is not returning to school. I know that this is alarming to some people. She just isn't happy going and I can't make her anymore. I just want her to be happy. I do hope that she will want to return at least for a couple hours here and there. It has actually relieved some of my anxiety. I don't wonder every morning if she is going, I just plan that she isn't. I also don't worry about her as much when she is with me and she can rest as much as she wants. Keith and Jenna were concerned about it and I think Jenna wants to stay home too. That isn't going to happen but I can take a hint. She is good a dropping them. Jenna will adjust to the change, but it has been a tough week for her.
Marco and I would like to thank Children's Wish Foundation for sending us Sea World tickets. We are hoping to go this Sunday if Sarah is feeling well and the weather is good. Of course, we will bring that wonderful princess stroller so it shouldn't require to much effort on Sarah's part.
I would also like to thank everyone on Merritt Island who have shown their support through calls, visits, meals, etc. We really appreciate the support our community has shown us.
Love, Jennifer
P.S. Emerald we are thinking of you today and hoping surgery goes well.
Friday, December 31, 2004 7:24 AM CST
We returned from our trip to the snow yesterday evening. We had a good time. There wasn't any snow but we drove into North Carolina to a place that makes snow for tubing. The kids had a good time doing that. Sarah went down the little hill with Marco. It probably wasn't the best idea a week after having a shunt put in, but we decided she may never have another chance and she really wanted to go. Its very hard to tell her no. Marco got a work out getting her to the top of the hill. Keith and Jenna did too. Sometimes they would wait in line for the lift up to the top but a few times they walked. I watched and tried to take pictures. I have issues with the camera so I'm not sure any turned out.
The cabin we stayed in was wonderful. It alone was an adventure. It also had better cable than our house, so we watched lots of Animal Planet and Disney. Keith and Jenna ran around outside getting dirty. The ice on the ground was a big deal and there were dogs to play with and horses to visit. They had a great time. We ate lots and lots of s'mores. The fireplace was fun too. It is interesting to see the kids' reactions to the mountains and cabin. I think we need to get them out of Florida more often. They all got car sick very easily and that wasn't a very fun mountain experience. Just a note for our loved ones out West: The elevation was only 2,500 feet, so more like foothills to some of you. I think the highest mountain is 4,500 feet. After flat Florida, it seemed like the high Sierras.
We left for the trip with Sarah recovering from surgery and Jenna having a major cold. We have come home with Sarah still recovering and having a cold. Keith is starting the cold as well. Jenna still is getting over it. She was a trooper though and didn't let it slow her down. Everyone is staying home and resting for the next couple days. Maybe a quick trip to Target to spend some Christmas money. Jenna is also getting some pet mice and Keith a newt to live with his toads. They talked about it the whole way home. Yesterday I was very worried about Sarah but this morning she seems better. She seemed very out of it and her walking wasn't good. Today she seems a little more alert and her walking is more stable. However, since her surgery she walks a lot on her tippy-toes. I'm not sure what that is about.
Sarah starts a cycle of Temodar tonight. That always makes life a bit stressful. She has appointments next week and Keith and Jenna both see the orthodontist. Our Christmas holiday went by very fast and I wish I had the kids home for another week. Can you believe I said that? This time last year, Sarah was sick from the flu and starting to tremor. Never did I think it was a brain tumor and so life threatening. I'm glad to put this year behind us but I'm so scared what the next year will bring.
I hope everyone has a healthy and happy New Year.
Love, Jennifer
P.S. I will be printing off the Guestbook and deleting the messages. Also, I am changing the pictures.
Friday, December 24, 2004 6:58 PM CST
Merry Christmas!
Sarah is not feeling her self but seems better than yesterday. She hasn't done much today but watch T.V. and take naps. We had a few visitors which helped cheer her. We also went for a drive to look at Christmas lights. She seemed to enjoy the sights. She isn't talking much and I'm really not sure why. She has complained about having a headache on and off.
Thanks you to everyone who has left messages of love and support. Marco and I appreciate them more than ever. We hope all of you have a wonderful holiday.
Love, Jennifer
Thursday, December 23, 2004 8:00 PM EST
We are home! Sarah is doing much better. Her CT scan looked fine as far as the placement of the shunt and her ventricles looked smaller. She is still very out of it. She isn't talking much and I think its because she is so mad about the whole thing. She is glad to be home and have Keith and Jenna near her. A big thanks to everyone who has left messages and offered help. If she continues feeling well, we will leave for our snow trip after Christmas. I'll try to post tomorrow and let everyone know how her day went.
Wednesday, December 22, 2004 7:41 PM EST
Sarah still isn't alert. She has been asleep since 1pm and awakening only to throw-up. I'm very worried about her. She looks miserable. The nurses and floor doctor said that when the pressure is changed inside her head, she can be nauseated until she adjusts to it. I hope they are right. The hospital took forever to get her a room out of recovery, then they got her a room and have already moved her again. I think she will stay put for now.
I am at the Ronald McDonald House to eat dinner and get some sleep. Marco tried sleeping earlier and said it is very noisy. A group of volunteers from Universal provided dinner tonight and it was excellent!
Wednesday, December 22, 2004 12:04 PM EST
Sarah is out of surgery and doing well. Surgery started about an hour late. We still haven't seen her and it will be awhile before she is out of recovery. She will stay in the critical care unit overnight and tomorrow morning they will do a CT scan to check the shunt. If all is well, she will then be discharged. Her shunt is programmable so that the valve can be adjusted to her needs. However, after every MRI she will have to see the neurosurgeon to have it checked because MRI's can throw the programming off. Her CSF looked clear and that is a good thing. I will try to let you know how she is doing later this evening.
Tuesday, December 21, 2004 7:05 AMCST
Yesterday was a long day for us. Sarah had a bad headache Sunday evening and again yesterday morning. I called the oncologist and we took her in for a CT scan at the hospital and then to Dr. Selsky's office. Her counts were good and she gained some weight, but her tumor had slight progression, AGAIN (results from MRI). Then we went to see her neurosurgeon, Dr. Gegg. Sarah has developed hydrocephalus (CT scan compared to last weeks MRI). She is scheduled for surgery on Wednesday morning. Dr. Gegg will put in an internal shunt (small tube from her brain to her stomach for drainage, all under the skin). He expects she will be home by Thursday afternoon, if all goes well. There is lots that can go wrong with surgery and shunts that scares me. She did great with her craniotomy so I'm hoping we will have the same experience. Sarah will have this surgery at Arnold Palmer, a children's hospital also in Orlando. The hospital switch is Dr. Gegg's request. Mostly because of availability.
Sarah's tumor isn't showing signs of shrinkage which would relieve the hydrocephalus. The issue of her chemo treatments still needs to be addressed. Temodar doesn't seem to be working, however her tumor is still considered grossly stable. I think this is relative. Sarah's tumor is already very big and they don't consider it progressing until its grown 25 percent. I don't see how her brain can fit 25 percent of tumor growth in it. I would like to put her next cycle of Temodar off until after the holidays, but that suggestion didn't seem to go over so well. Marco and I feel this may be our last Christmas with her and we don't want it spoiled by her Temodar cycle (as if shunt surgery isn't already doing that). We would like to take her to the snow after Christmas. Dr. Gegg feels we will be able too. (He always makes us feel hopeful.) But, we don't want to bring her Temodar with us and the hives issue too. We will see. The doctors will have to have do some major convincing for us to keep her Temodar cycle on schedule.
I told her this morning and she cried lots of tears and is very scared. Jenna and Keith are being very supportive and keeping her busy. Their love and attention is very calming for her. She asked if they knew (I told them yesterday)and wanted them near her. She was very upset about having hair shaved (only small patches). I don't blame her. She has waited so long for the hair to come back and look good. She commented about having two surgeries in a row and I think she meant it wasn't fair. It broke my heart and I had to take lots of deep breaths to not bawl with her. She was a bit concerned about the incision above her abdomen and how was he going to get the tube there. Luckily, she was satisfied with a very vague answer because I don't know exactly how the tube gets from her head to her stomach with only a few small incisions. I don't think I want to know either, not until its done and there weren't any problems. Knowing will make me think about all the things that could go wrong and then I'll sleep even less.
Marco and I are, as expected, in major turmoil. These decisions are so hard to make and its never for sure its the right one until later. Today we will be busy preparing. We have to make arrangements for our stay in Orland (hopefully at Ronald McDonal House) and some doctor calls. We also have to make arrangements for Keith and Jenna. We will not have time to call everyone and I'm sorry some of you have to read it here. I will update as soon as possible after surgery.
After our busy day at the hospital and doctor appointments, we went to Dolly Parton's Dixieland Stampede. Its a dinner and horse show. It was fun and the kids all enjoyed it. Sarah even got a bit of her spark back for a moment.
I want everyone to know we are thinking of them this holiday season and hoping everyone has a good Christmas and happy New Year. I have two good friends fighting breast cancer and I want them both to know I am thinking of them and praying for their wellness. I also want all our brain tumor friends to know we are praying for them as well.
Love, Jennifer
Tuesday, December 14, 2004 6:14 PM CST
We had a fun weekend! The kids enjoyed themselves and we ate lots of junk food. Continental took us for a ride to the North Pole which was from the Continental hanger, around the runaway and back. The scariest part was going up and down the stairs to the plane. After we arrived, there were lots of activites for the kids and a show performed by various dance groups and some karate type show. Sunday we went to Fort Wilderness at Disney World. Sarah and Jenna got to ride a Shetland pony. Keith was to big. He really is growing up.
Today I took Sarah for her MRI. The whole procedure went very well. I didn't get fainty when the nurse put the IV in her, so even I'm getting better at them. We probably won't hear the results until Friday at the earliest. Tuesday, December 22nd, Sarah has an appointment with the oncologist. She is scheduled to start Temodar cycle #9 on the 23rd.
Sarah is still resisting going to school. I'm sure it will be a major battle after the holiday break. I talked to Sarah's OT at her school and she has noticed the same things about Sarah as I have. Sarah is having more right side weakness and it is noticeable when she walks. She rarely uses her right hand. I'm so worried about what this MRI will tell us. I can't imagine it is going to be good.
This is my gingerbread man making tip: DON'T DOUBLE THE RECIPE! Sarah wanted to make cookies as a treat for having her MRI. I'm thinking chocolate chip or maybe oatmeal. NO, she wanted gingerbread men. Sarah doesn't even care for them much. She tasted a leg and didn't ask for more, so what does that tell you? They turned out yummy, gingerbread just isn't a very sweet cookie. They decorated them with mint Skittles and the two just don't go together, so I pick them off. Maybe they will get up and run away?
We have more Monarch caterpillars than ever before. We had at least 40. I stopped counting after that. I adopted 10 out to a friend who also has milkweed plant for them because I'm running out. Most of them are ready to spin into their chrysali. Tonight there are freeze warnings inland. Can you believe it gets that cold here? Tomorrow is suppose to get into the 50's! I'm thinking the caterpillars better find somewhere warm because I'm not babysitting that many caterpillars.
I posted some new pictures.
Love, Jennifer
Friday, December 10, 2004 10:49 AM CST
Happy Holidays!!
I've made a decision. I'm not sending out Christmas cards this year. I'm sure everyone will understand. Please know we wish all of you a joyous holiday and happy New Year. (That was so much easier.)
This weekend is going to be busy for us. We have two holiday parties to attend, both for kids with cancer. It should be fun for the kids. It always makes me a bit depressed to see so many kids with cancer and their families. One is at Disney's campground and we are hoping some of the princesses show up, oh, and Santa too. The other is in an airplane hanger at the airport. Now just that alone sounds exciting and maybe noisy.
Sarah has manged to attend school for three hours each day. She comes home and usually goes straight to bed for a couple hours. This week she has lost urine control twice. Once she was on her way to the bathroom but the other one she really couldn't explain. She has a bit more weakness on her right side as well. I can see it in her walk. She confirmed this by complaining that her left leg is hurting which I believe is from compensating for the right. I can also see it in her smile. The right side of her face just isn't as cheery as the left. Of course, these little signs are hard for me to deal with emotionally. I don't think she knows that they mean anything, if they do. Her next MRI is scheduled for December 22.
This holiday season has been very bittersweet for us. Its very hard to have the spirit of Christmas when we wonder if its our last one with her and yet we are so grateful to have another. Its a tug-of-war emotionally. Sarah and I made Russian Tea Cakes yesterday and she had a great time. She loves to help in the kitchen and eat the goodies. I had to choke back tears while we were making them because she was so adorable. Wednesday, I gave her a big hug and one of her bottom teeth popped out. I told her I hugged that tooth right out of her and she laughed about it.
Love, Jennifer
Sunday, December 5, 2004 5:44 PM CST
Sarah refused to go to school last week. I took her Wednesday to "visit", again on Thursday, and then the morning on Friday. She insisted I stay with her and when we would discuss me leaving, she would get tears in her eyes. She says she doesn't want to be without me. It was a rough week. It breaks my heart that she doesn't want to go to school. I asked her what she wanted to do if she didn't go to school and she said, "I want to sleep and watch T.V." I can understand that because I secretly feel the same way. Getting up in the morning can be hard enough - getting out of the house can be exhausting.
She has been sleeping a lot lately. Taking long naps and still sleeping at night without any problems. She did develop hives but not as severe as last cycle and they didn't last as long. Kytril and Zofran have similar chemistry so I'm still not convinced its the Temodar. The hives developed a couple days after stopping Temodar but while I was still giving her Kytril. The Kytril worked great for her nausea. One night she was due for a dose, which I forgot, and she promptly threw-up dinner. It was a good dinner too! She liked it and ate lots. Even she was a bit sad about it. She snacked later once the Kytril took effect.
Today we decorated the house for the holidays. She needed quite a bit of encouragement to get up and help with the tree. She just wanted to lay there. Her behavior concerns me, but in light of her knew knowledge, I'm sure its to be expected.
She has a busy week planned. She is Star Student at school and I'm hoping that will encourage her to go. She gets to bring a TOY! (She picked her pink blanky. I don't think she will really share it, just show it.) She also has Daisy's tomorrow. Tuesday there is a field trip to see The Polar Express. She doesn't seem to have a problem with school, just a problem being away from me. I love her, but I could use a couple hours a day by myself. If she goes tomorrow, I have promised to pick her up by 11 am.
Sarah and Keith were in the Merritt Island Holiday Parade this past Saturday. She seemed to enjoy that. She rode on one of the floats. I haven't checked the pictures yet but will post one if they are any good.
I hope everyone is doing well. Thanks for checking on Sarah and for all the guestbook entries. A special thanks to Aunt Jodi's family as they have been so good about it.
Love, Jennifer
Tuesday, November 30, 2004 7:19 AM CST
Evening Update
Sarah started breaking out in hives before going to bed. They don't seem as bad as last cycle. At least not yet. She ate a wonderful dinner and threw it up about 15 minutes later. I realized it was because her Kytril had run out. It lasts 24 hours. She ate later in the evening after taking Kytril and seemed fine. We will see how she is in the morning.
Sarah asked that I tell Jenna myself that she could die from the tumor. Jenna was very upset and cried a bit on the hysterical side. She even thought she would throw up. I held her and she got a good cry out. She doesn't like talking about the brain tumor because it makes her sad. She said she tries to forget it and act happy because that makes her feel better. I was surprised she didn't already know. She was clueless. I didn't expect such a strong reaction from her. I encouraged her to talk about it with me and ask questions. Sometimes not knowing is more scary than the truth. Hopefully, she will share her feelings openly.
I posted new pictures of horseback riding. We also completed our gingerbread house this afternoon. The three of them had a great time making it and eating the extra candy.
Sorry it has been awhile since I've updated. Marco pointed out to me that I have waited to long. Perhaps you will hear from him in the future.
We had a wonderful Thanksgiving and hope all of you did too. My Dad and his girlfriend, Trudi, came for a visit from California. We didn't do much. Just ate and visited.
Sarah started Temodar cycle #8 the Wednesday before Thanksgiving. We switched her to Kytril instead of Zofran because of the hives last cycle. It has worked good for her. We give her .5 mg every 24 hours. So far, no hives. However, she seems tired. Yesterday and today she has stayed home from school and napped during the day. Could have been the busy weekend playing with Papa too.
Sunday was an exciting day for Sarah. She got to ride a horse!! She liked that a lot. I wasn't sure she would get on it. A special thanks to Lisa and her daughter, Jennifer for that treat. Marco works with Lisa. Keith and Jenna got to ride too and had a great time.
Sarah last doctor appointment went well. All her blood counts went up and she gained 2 lbs. She has also grown about an inch since August. We are pleased to see growth because whole head radiation can cause major endocrine problems and a lot of brain tumor kids take hormone shots everyday. Not that shots are the worse thing in the world, but I would like to avoid it. Radiation shuts down the pituitary gland and can happen years after radiation, so its something we will always be watching for.
Sarah has been very stubborn about taking her supplements with me. This seems to be when its just the two of us. This morning she absolutely refused and seemed mad and grumpy. I asked her if she wanted me to tell her again what each one does and she said yes. Well, after doing that she still wasn't taking them. We talked about her tumor for a bit and how we were both sad about it and she seemd to have something on her mind. I asked her what she thought would happen if the tumor continued to grow. She said she didn't know but has been thinking about it for a long time. So, I told her she would die. It was heart wrenching. I knew the time was coming. We talked about dying and how it was scary but mostly because we wouldn't see each other for a very long time. That upset her a lot. I told her dying was easy and we would be there with her and that it was like going to sleep and not waking up. That seemed to calm her some. I asked her now that she knows, would she choose to live or die? Thank goodness she said live. Though later in the conversation she said she thought the tumor would start growing and she would die. I think I have a big stake in my heart right now. I told her how good she was doing and that kids do live through brain tumors. I asked her why she thought that and she really didn't have a reason, she said it was just a feeling. She is upset, we both are. We talked about how painful it feels but it isn't a physical pain and it doesn't go away. I think she understood that. I'm sure it will be an ongoing discussion. I told her most adults around her know this and that Keith does too. We talked about Jenna and how she doesn't know. Sarah would like me to tell her today.
Well, after that very depressing discussion, I think I will clean the floors (Sarah is watching TV and did take those supplements). Life goes on, that is a fact. It is possible to do housework and cry at the same time, this way I don't cry more later, when my house is a mess.
Love, Jennifer
Thursday, November 18, 2004 6:23 PM CST
Hi! I took a couple pictures of the kids that I wanted to add.
Sarah is doing well this week. She has been going to school everyday, though she is tired when she gets home. She has had some headaches but they seem to be only moderate. We are looking forward to this weekend. We will be attending the American Cancer Society's ROCK Weekend for families who have a child with cancer. Saturday will be fun activities for the kids while the parents attend informational and supportive classes. Sunday we receive passes to one of the Disney parks. We are really looking forward to it. The pool looks like great fun so we are hoping for good weather.
A wonderful thing happened to us today. Our friend, Mrs. Patrick, gave us a jogging stroller for Sarah. This is a wonderful gift as Sarah has outgrown the small umbrella stroller we had for her (not to mention it broke under her weight). The jogging stroller will give her a much more comfortable ride and the tires can support her weight. I was very touched by Mrs. Patrick's generosity and cried on and off all day. Sarah was overjoyed and Keith and Jenna took her for rides in it. Sarah rode like a true princess. I woke up this morning feeling very hopeless and this was the support I needed. The stoller was a wonderful gift but the reasons she did it where the best part. It really lifted my spirits. Thank you Mrs. Patrick for your love and concern.
Well, I noticed my milkweed plant looked a bit abused and there were lots of caterpillars. So, I took them all off the plants for a proper counting and we have a total of 30! This is a lot and if they eat to much more plant I will be adopting them out to my other butterfly lover friends. Most of the caterpillars are quite big so should be spinning into their chrysalises soon. All are Monarchs (occasionally we get Queens). Check the photo page for a picture.
Love, Jennifer
Saturday, November 13, 2004 1:02 PM CST
Hi!
Just changing pictures on the website so I thought I would do a quick update.
Sarah made it to school most of the week. She is feeling much better and more energetic. Yesterday she rode her bike around the block. Even more amazing, Keith walked along with her to make sure she had no problems (I'm still not up for running after her on a bike). He even did it without a fuss. It was a good day as everyone was happy and pleasant to each other.
Today Sarah and Jenna have been busy playing, cleaning rooms, and writing notes to the J.O.Y. Ministry in San Jose, CA. They sent each of the kids their own joy box. The joy box had a present for each day of the week with a bible story to match. The kids enjoyed all the presents. It really brought a little J.O.Y. in their lives. Keith spent his morning Scounting for Food with his troop.
Florida is finally cooling off. We are still wearing shorts though, but we can go outside without sweating! We have a butterfly garden and I counted five Monarch caterpillars this morning. They are still very small. We released lots of Monarchs, Queens and Swallowtails last year. Winter seems to be the most active for the Monarchs and Queens.
Love, Jennifer
Tuesday, November 9, 2004 11:51 AM CST
Sarah had very bad hives last week. They lasted from Monday evening until she went to bed Wednesday. Of course they were completely gone when it was time for her doctor appointment on Thursday. I am suspecting they were from either the Temodar or Zofran. I have a lot of anxiety about the next chemo cycle because I worry she could develop more of a reaction and have breathing problems. The doctors didn’t seem concerned. However, I have since had contact with a family whose child had hives from Temodar and will bring this to the attention of Sarah’s doctor. We took her off all supplements for a time and have started them back. She seems fine with them so we have ruled them out as the cause. As you can imagine, Sarah had a rough week. She finished her seventh Temodar cycle Sunday. She already wasn’t feeling well from that, when the hives broke out.
Thursday was neuro-clinic at Sarah’s oncologist. It is an opportunity for us to see her neurosurgeon, neuro-psychologist, and the adult neuro-oncologist. Her last MRI was the hot topic. There seems to be some progression in a small part of the tumor towards her forehead (motor area). She doesn’t show any physical symptoms of tumor pressure on that area and the progression noted was very slight. It could even be from her MRIs being done on different machines and the slices not exactly the same. There are several variables that could contribute to the difference in the last MRI and the time before. So, basically we are in a wait and see mode and will continue with her same treatment. Sarah’s regular oncologist was on vacation (they have real lives?) and not there to consult, but his partner and the neuro-oncologist discussed adding Celebrex to her treatment. This is something we are researching and will consider. Celebrex controls inflammation (used for arthritis) and has shown some promise in brain tumor treatment. We will also consult with her nutritionist first because she is on supplements that control inflammation. Celebrex can have side effects when taken in larger doses, which is given for brain tumor treatment.
Sarah missed most of school last week. She went yesterday and today. However, today she is coming home early. Her teacher called and she seems tired and not eating lunch. Hopefully, it is just because she is has been out of her routine. Marco will pick her up after Math. This past Friday I had minor surgery. She knows I’m home resting so that may be part of it. By the way, I’m feeling much better today.
Again, thanks for the guest book entries. Sarah really enjoys them and so do I.
Love, Jennifer
Saturday, October 30, 2004 8:07 PM CDT
Sarah’s MRI report states there is subtle progression of her tumor. We have an appointment with her team of doctors this Thursday and will discuss the results in depth and find out exactly what this means. It was a hard day for us because regardless of what it means, the tumor did not shrink. Its very hard putting her through so much and not seeing the results we want. Most stable tumors resume growth and are more aggressive, so even stable is disappointing. Of course, we want all the time possible with Sarah, but I admit we are greedy and want a lot of time. I’m hoping for forever. We are thankful for our time with her today and her high quality of life. I still long for the days of no cancer, but know that someday I may long for this day even with the cancer. I will post again when we learn more.
Sarah had her Fall Frog Festival with her class yesterday. She had a wonderful time and the happiness radiated out of her. We are so grateful she has a wonderful teacher and class family. She is happy at school despite all its challenges and that is something we are very thankful for.
Keith and Jenna got their flu shots yesterday. Keith was very brave but Jenna needed some forceful persuasion. She was not happy and was a bit mouthy afterwards. We worked it out and all is well. Sarah was with us and was prepared. She brought her purse with candy hidden in it, to give them after they got their shot. She loves them so much. After getting the news of Sarah’s MRI, I wasn’t very sympathetic to Jenna. I feel guilty for it. They know they were getting flu shots because Sarah is on chemo. I worry about the two of them and hope they don’t become resentful towards Sarah for all the sacrifices they have to make. There is just no win-win answers to any of it.
I would like to thank everyone for the wonderful guestbook entries. We appreciate everyone who has inspired their friends, schools, and churches to pray for Sarah. Friends of Allie has been wonderful and supportive. At first Sarah wasn’t happy I blabbed about her blanky, but after everyone shared their stories, she said she had a secret. She told me that one of the girls in her class also has a blanky. I thought that a nice secret.
I would also like to mention that Candlelighters is raising awareness and funds through their Cancer Awareness Tree 2004. When you donate money, a ribbon, with the name of the child you wish to remember or honor, will be placed on the tree. The tree will be displayed in the Old Post Office Pavilion in Washington D.C. Candlelighters is an organization that supports children of all cancers.
Also, I would like to mention that Keith and Jenna are SuperSibs. This is another great organization that supports the siblings of kids with cancer. They send Keith and Jenna encouraging notes and even a trophy for being a SuberSib. The website really identifies with the sibling and their feelings.
I will post Halloween pictures during the week. Sarah is going to be a spider (thank you Grace Methodist Pre-school), Jenna a witch, and Keith is going to be Dracula. Sarah is in the middle of her Temodar cycle and so far very tired. I’m sure she will find the energy to dress up and visit a few neighbors. She ate lots of junk food yesterday and enjoyed it. The call of candy will be too loud in her ears to stay home.
Love, Jennifer
Halloween Update: Sarah did Trick-or-Treat and had a good time. She mostly rode around in the stroller enjoying the activities. She was very tired when she got home. Today (11-01-04), she stayed home from school because she isn't feeling well from her Temodar.
Wednesday, October 27, 2004 6:46 AM CDT
Sarah's MRI went fine yesterday. She has some scar tissue developing in her vein from being poked too much and she had to get poked twice. That wasn't pleasant but she was real good.
She also had an appointment with the oncologist and her blood counts were good to start her cycle of Temodar today. Her platelets are the lowest we have seen them. Platelets tend to cycle down the more treatments you get and we are hoping she will not need a transfusion. If that happens, we are hoping to work it out so Marco is the donor. He hasn't been giving blood in case she needs it. The blood banks have been leaving him messages on our answering machine even. So, if you can give blood, please find the time.
We had a minor crisis. Sarah left her pink blanky at the hospital and we didn't notice until we were almost out of Orlando. We pulled over to check the car and it wasn't there. Marco was with us so I could ride in the back with her. She was crying the whole time and she had me crying too. Luckily, it was waiting for us in MRI. We had gone back to pick up films and she LEFT it. She was so happy and said that now she could sleep. It was the best thing to happen to me all day, because I don't know what I would have done without her blankey. It brings her so much comfort. It really has become a member of the family!
I will post when I hear the results of her MRI. Thanks for checking on Sarah and leaving her messages. She enjoys reading them. It makes her feel good knowing so many people care about her.
Love, Jennifer
Monday, October 25, 2004 2:39 PM CDT
Tomorrow Sarah has her MRI appointment. I'm filled to the top with anxiety and can hardly focus, but she is doing great! I'm just happy I can worry for her and I do it so well. Of course, the whole week will be filled with anxiety because we won't find out the results until later in the week. I will post as soon as I hear something.
Love, Jennifer
Tuesday, October 12, 2004 2:34 PM CDT
Sarah has been doing well this past week. She has been attending most of the day at school. Sarah showed her class one of her MRI films because they are studying the brain. Her teacher said she was quite the "teacher" and talked about her tumor. I was happy to hear that she was willing to discuss it with her classmates. She asked me this weekend how long she was in the hospital for surgery and was surprised it was a whole week. She doesn't seem to remember much of it and that is fine by me.
Keith went camping with boy scouts this past weekend. It rained which disturbed the fire ants. His ankles got a full attack. He seemed under the weather yesterday but seems fine today.
Jenna is doing great in school. She has started a crochet project and keeps busy reading and playing with friends after school. We decorated the house for Halloween this past weekend. Jenna and Sarah have already decided what they will be, but if they are like last year, that will change a couple times before Halloween gets here.
Sarah is schedule for her next MRI on October 26th and to start her next cycle of Temodar on October 27th. That puts her last day of Temodar on the 31st. I guess I'll have to help her eat her candy since the nausea last a couple days after. Anyway, it isn't good for her.
Love, Jennifer
Sunday, October