Merry Christmas!

So we have almost made it through our year of firsts. It is weird to have a family picture without her in it, and yet we could not think of a good way to make her a part of it. Christmas time is hard, but so was her birthday, Thanksgiving, and everything. We'll make it through fine, and it is comforting to feel the tears come, it would be strange if they never did. I do all the shopping in our family, as many other wives do, and it is strange to see all the girl stuff and not have a reason to look through it. I still have to remind myself that I have no reason to search for girl jammies or baby dolls or craft stuff.
We are so grateful to all of you that remembered Carmen's birthday. You guys are amazing. My boys are doing so well, and part of that is because of the love they feel from everyone around them.
Timothy, my youngest shows the most feeling at losing his sister. When she had just recently passed away he would ask us almost every day when she was going to be resurrected, expecting to see her in her perfect body any day. He even prayed and asked Heavenly Father to resurrect her soon. Jesus came back and showed himself, so why not Carmen? He doesn't ask that anymore. Sad. He does love looking at our picture book of her and doesn't understand why his friends don't enjoy looking at pictures of his sister. He loves showing her off. One day a couple months ago a little boy came up to him, just playing, and said, "I'm going to kill you", and Timothy punched him. When I asked him why, Timothy told me he thought the boy was really going to kill him. He takes death very seriously. He also tells me from time to time, "mommy I won't die because you can't handle another kid dying". He is very sweet.
We are overall doing fine, we miss our girl, but we love our life. Thank you to all of you who talk to us about her. We don't like pretending she never existed.

This is Carmen when she was three years old.
I know a lot of people wonder why a little girl would have to go through so much. I would like all of you to know I asked Carmen a few different times if she wished this had never happened to her and each time she said no. She appreciated the good things that came out of this. Some of them are: getting to spend a lot of time with me, seeing the love her friends had for her, and feeling God's presence with her non-stop. I know that the purpose of this life for all of us is to be tested to see if we will choose good or bad. Some of God's spirits do not need to be tested as long as others. Carmen was tested for long enough and was ready to move on to the next step. I can tell you for certain that there is life after death. Carmen was visited by angels towards the end of her life. The last few days of her life she would be moving her lips and carrying on conversations with people we could not see, but she would be looking right at them. The few words we caught were, "no, I'm not ready" or "maybe tomorrow" or "where did your friends go" or, "why do you have white feet". I am sharing these very tender memories with you. I hope you understand and don't think I am crazy. I know that this is for real.

This is Carmen with her Grandma Galbraith.
This week has been a hard week for me. We found out that my son Vincent has pneumonia, he did not have too severe of a case, but it reminded me again how precious life is. I have been thinking a lot about Carmen and missing her this week. As time goes on it is easy to start wondering if I did enough. I love her.
I would like you to know that I am speaking at the Luminaria Ceremony for Relay for Life. It is on June 13 at 9:00 P.M.
I would like you to know also that my nephew, Chase, is doing an Eagle Scout project for the Family House in San Francisco, and if you would like to donate anything just email me.

This is Carmen with a bunch of little American Girl Dolls someone gave her.
It is hard to transition to a life without Carmen. You all have been so incredibly kind and generous with us it is amazing. I am glad Carmen is not suffering anymore. I love going and sitting in her room. It is warm and peaceful in there, and it is almost like I am still sitting next to her as she lay in bed. I love my family dearly. It is hard to explain how lucky I feel. I am sad at my lost opportunities and friendship with Carmen, but I feel so lucky to have had her at all. I feel very lucky, or blessed, to have each of my boys too. I have a wonderful, beautiful family. They drive me crazy too. We have fights and problems just like everyone, but overall life is so good.
We don't know a good way to post our talks and Reed's song online still, so if you would like a copy of anything you may email us at: galbraith7@att.net.

Our First Everything without Carmen

It's Reed again.

Here we have another shot from Jack's Camp. I figured we already had lots of pictures of Carmen on the blog, so I picked this one of Vincent in his younger days, before he turned 7 and all. I wonder what's on his mind here.

I've been meaning to write this post for several days now. Thanks to all of you who participated in the ice cream social are long overdue. Hard to believe that was nearly two weeks ago! We were once again overwhelmed by the outpouring of love and support we received from all of you. There is no way we could name everyone, yet it's literally true that every single one of you has strengthened us and lifted us higher.

So what's next?

Life without Carmen is next. No, she hasn't forgotten us, and we certainly haven't forgotten her, but she's on the other side of the veil now. We went out to dinner as a family (a rare event) the other night. There was a gap between two of our boys, where Carmen might have been once upon a time. I tried not to think about it at that moment, but my eyes kept moving back to the empty seat. Our first family dinner at a restaurant without Carmen. I try not to overdo this in my mind, but I can't help but notice her absence.

On Sunday I visited Primary (children's Sunday school) for the first time since Carmen died. It was hard. All those little girls in there, reminding me of my own little girl. Do you know what, I don't mind crying. I actually crave it because those are the times when Carmen seems the most real to me. It alarms me, how much I typically forget about her, all the little everyday things I always took for granted before. Her hair. They shaved it off before her initial surgery, and it never really grew back. It tried, but it just ran out of time.

People ask us what we need. Do you know what I feel a need for more than anything? Communication, any form, with people who care about Carmen. Each word, each touch, is like a lifeline that I cannot wait to grab hold of. I know some people (maybe almost all people) worry about saying the wrong thing. I'm not going to lie, there are wrong things that can be said. And quite honestly, there are not that many right things that can be said, either. "Hang in there" and "It gets better" are noble sentiments, but did you know that these things are already implied by the fact that you care enough to reach out in the first place? No words are eloquent enough to say more than that mere gesture of reaching out.

To those of you who have done so, who continue to do so, or who will do so, we owe you undying gratitude. Those you help in the future will thank you as well.

Aftermath

Hi, it's Reed again.

Here's another snapshot from Jack's Camp (for pediatric brain tumor families) in October. I am just so struck, more and more, by every picture of Carmen I see, by how beautiful she is, and how relatively unaffected by her illness she seems to be. I love her so much.

Last week was so beautiful. My insides were tied up in knots as we drove to the public viewing on Thursday, but as soon as I stepped into the viewing room, I had such a sweet peaceful feeling that just stayed with us for the rest of the week (even when we were a bit nervous). Each one of you that came to the public viewing, the family events, and the memorial service, and up to greet us after the memorial service, brought us so much joy amid our sorrow. We thank all of you for every effort you made to attend the services. Every effort made a difference to us.

Some of you have asked to get a copy of a song or remarks from the memorial service. We would like to post this material in its entirety but are not quite sure how to do that. We will talk to someone who knows how to do that stuff and see what we can come up with.

Today was a special day in its own right. We feel like God is gently nudging us to move forward. It's a new month, and the beautiful rainfall seemed to be a bittersweet combination of mourning and cleansing. We went to Palo Alto today to witness the blessing of our baby niece. She was born the same weekend we found out Carmen was terminal. Her parents chose to name her Abigail Carmen. I don't think we are imagining things, sensing God's hand in the timing. By the way, our Sunday School class today was taught by Steve Young (yes, that Steve Young), who is a marvelously articulate and thoughtful speaker. So that was a nice treat too.

We sense that many of you have been staying away out of respect for all we had to deal with last week. If any of you are inclined to visit at any time, please come. We would love to talk with you about Carmen and about the events of the past week. We will be healing from these wounds for a long time, and we know many of you will be as well. We know that for the most part we all need to return to our normal lives, but closure is a slow process, so please don't leave anything unsaid that needs to be said.

In that spirit, we are very much looking forward to the ice cream social this Thursday. We will enjoy associating with you and talking with you at greater length. We respect and appreciate all the gifts you have given us. You have helped us so much. We do want to emphasize that we feel the time has definitely come to shift our gift-giving focus to others in greater need. Please be thoughtful and prayerful in your giving, and we feel that you will be led to give in ways that will be most pleasing to God, and to Carmen.

I wanted to share one more thing. On Friday at the graveside service, we chose to stay and observe as they lowered Carmen's body into the ground. As the cemetery workers slowly and reverently moved the casket to its resting place, the little children in attendance came forward and quietly watched the descent. I thought of the parallels between this spontaneous scene, and Carmen's baptism less than 6 months earlier. It was a sacred moment.

Timothy (our 5-year-old) and I were talking tonight about how one day God will fix Carmen's body and she will be able to move back in. "Will He fix her hair too?" he asked me.

What a beautiful thing is the mind of a child.

This is Carmen at a camp for kids with brain tumors at Camp Arroyo in October. She is wearing her favorite pink jacket, and doing a puzzle, one of her favorite things to do.
This is our schedule:
Thursday, February 26 from 4-6 P.M. there will be a public viewing at Higgins Funeral Home located at 1310 A Street, Antioch, CA.
Saturday, February 28 we will have a memorial service at 6:30 P.M. at the Church of Jesus Christ of Latter-Day Saints at 2350 Jeffery Way, Brentwood, CA.
Thursday, March 5 we will have an ice cream social celebrating Carmen's life. It will be held from 6-8 P.M. at Knightsen Elementary School, 1923 Delta Rd., Knightsen. For more information or to rsvp to this event please email caringforcarmen@comcast.net.
We are inviting everyone that would like to attend any of these services to please come. Thank you so much for all you have done for us.

Hi, this is Reed (Carmen's dad). Yes, I was at the golf tournament as well. This was one of our more "up" moments. Just a few days after this picture was taken (about 5 months ago), we would receive the news that Carmen's cancer had returned.

Today, the day after Carmen's passing, was spent quietly at home with our family. We enjoyed one another's company and began to make some preliminary arrangements for services. (We are tentatively planning on Fri/Sat 2/27 and 2/28 and will publish the details once everything gets finalized.)

We are so thankful for your prayers and heartfelt sentiments. There is a beautiful feeling of peace and well-being in our home that you all have contributed so much to. We have no doubt that God is watching over us, and we feel His love, and yours.

We look forward to visiting with many of you over the next several weeks (and beyond). We feel that we are now ready to begin receiving some brief visits here at home. Please note that we will be out and about for much of the time over the next several days, so catching us at home will be hit-and-miss. Please be patient with us and we will all work together to get closure as we mourn together and come to understand how these events can lead to greater happiness for all of us.

God bless you all. We love you.

This is Carmen and me at a golf tournament in honor of her about five months ago.
Carmen passed away at about 10:20 on Wednesday night. She fought it tooth and nail, but her little body could not handle the fight any longer. I am very proud of her. She has taught me a lot. As I have said earlier, Reed and I are blessed to be her parents. We know we will see her again, and that she will be helping us through this life. We would like to spend Thursday privately, so if you happen to call or stop by we will have someone else here that can help you. I will write again this week to let you know more about her memorial service. We are so grateful to all of you, old friends and new. The simple cards and thoughts to the dinners and gifts and house cleaning and hauling away of my junk, have helped us so much. I hope I can help someone in the ways you all have helped me. I am honored to be all of your friends.

This is Carmen and her crazy brother James. This is in March of 2008. Carmen was still undergoing chemotherapy at the time.
This has been a hard week. My girl is slowly drifting away from me, and I feel like I am not giving my boys the time with me they need. Carmen never made it downstairs again. Now if I shift her body even a little bit, it puts her in major pain. She can't see much of anything, and for her to hear you, you almost have to yell. She no longer does stickers or anything else. It is hard for me to leave her side, because she says maybe four sentences a day and I want to be there to hear them. She is not eating and drinks very little. The good things are, that she is peaceful and does not seemed bothered by her limitations at all, and she is happy as long as I am in her room with her. Even though all this has happened in a very short amount of time, Reed and I still feel the peace that comes through the Spirit. Thank you for your continuous prayers. I know Carmen is being watched over by angels, and they will help her through her days ahead. I also know that Carmen is very special and being called Home at her young age for a special purpose. Our roles will soon be reversed and she will be the one guiding me and helping me make good decisions, so that I can see her and be with her again. I love her very much, and miss her conversation and her smiles already.
As I said earlier, one of the hardest things about this for me is that I feel like I cannot give my boys the attention they deserve, so thank you to all of you that have spent time with them. I know I would be a mess if it weren't for all of you. All of the dinners have been delicious. Thank you to all of you that have come and made Carmen feel special too. Visitors are still welcome.

This is Carmen about two years ago.
I just wanted you all to know that I am really touched by how many people want to help us. We appreciate all the visits, meals, cards, stickers, presents, packages, donations, etc. Carmen has been keeping to her bed yesterday and today and is sleeping most of the time. She did perk up for a couple of hours tonight, and guess what she asked to do? Yes, she wanted me to read to her while she did stickers. And guess what she ate? A couple of Doritos and drank some chocolate milk. I want you all to know you are always welcome. We love having you and Carmen says she's coming back downstairs tomorrow.

This is Carmen and her good friend Jessee, and one of Carmen's American Girl Dolls, Samantha. This was a day last week when Carmen wasn't feeling so good.
Thank you so much for all of your prayers. Because of them Carmen was able to talk more, joke around, and read to herself again! We are so grateful for this good week. You have no idea how fun it was to have a conversation again with my little girl. We have enjoyed all of your visits so much. Carmen just told me yesterday how much she enjoys all the different people that stop by and visit with us. Carmen is enjoying her great aunts visiting and her second cousin. Last week she really enjoyed her cousins visit from Washington. She still enjoys stickers so thank you so much for all the stickers that have been given to us. Thank you for the gifts and the dinners. They have been wonderful. Thank you for the bracelets. I love them. We have a website that you can log into to sign up for dinners, and if I need more help I may start using it for other things also. It is http://www.lotsahelpinghands.com/c/611394/. I am not sure how this exactly works, my friend set it up for me. If you have trouble signing in contact my friend Heidi at: hkballer@hkballer.com. We continue to be grateful for everyday that we have, and can feel the support of all of your prayers.
James is sooo cute and intelligent. That's Carmen's brother, and he wanted me to tell you all that.

This is another day Carmen was all smiles. This is after she got baptized and became a member of The Church of Jesus Christ of Latter-Day Saints. It was a very special day.
This week Carmen started off feeling pretty good, but by the time Tuesday rolled around she was feeling lousy and only ate two bites of food. She was, however, given some money to spend at Michaels (thank you) and was so excited to go and get some things that she did not get the day before when I took her. She also wanted to buy something for her brothers. We were quite the sight trying to wheel her chair around and carry all of her purchases. This trip was very hard on her, and I thought that may be the last time she wants to go out. She informed me today, though, that she would like to go there again tomorrow and replace some stickers that I misplaced of hers. We'll see if she can make it. Wednesday was a lot like Tuesday and she only ate two bites again. I was worried, but Thursday she perked up and was able to eat and not throw up as much. She has trouble seeing now, so I read to her. She can still color, which she enjoys, and she can put stickers in a journal, which she also enjoys. Her pain gets a little worse everyday, but we are able to manage it so far ourselves. She has enjoyed all of your visits and gifts. Thank you so much. She does not like to talk usually, but she enjoys seeing all the people that love her, and she usually enjoys listening to us talk. We all have enjoyed your meals. Thank you for those. Everybody is doing so much for us. We are overwhelmed with love and appreciation for all of you. Thank you. Thank you again for your prayers.

This is Carmen, a few aunts and cousins, and me at the American Girl Store. I am so glad that we had this opportunity together. These pictures are hard to see on the blog, but you can see how radiant her smile is. She was smiling like this the whole time we were in the store.
Reed and I have decided, after much prayer (including yours, thank you) that we will keep Carmen home and not give her any more treatments. You can imagine the heartbreak we feel at recognizing this, but Reed and I both believe in not mourning until we have truly lost her. You cannot imagine how lucky we feel to have been blessed with this amazing girl. We feel lucky that we have been given time to know that her life will be short, and we can spend a lot of time with her before we say, "see you in heaven". We will not let other things get in the way of spending time with her. "It is better to love and have lost than to never have loved at all."
This week has been very hard on us. Carmen spent all of Thursday crying, and sometimes screaming from pain. She seems to be more comfortable now. She has lost a lot of her energy, though and does not talk, smile and joke as much, but every once in a while she'll still throw a joke out there. We should be having nurses coming in this week to help us care for her. So my plan now is to sit and spend as much time with her as possible. Many of you have asked how you can help. If you would like to help, anything that would allow us to spend more time with our daughter would be great. Frozen dinners have helped us a ton, thank you! Sometimes I have to go out, so if you would like to come and spend time with Carmen while I go and get some stuff done, that would be great too. Your donations have helped us more than you will ever know. Thank you for your generosity. The fresh fruit that was given to us was wonderful. Ecowater, and those that helped with that has been great. I no longer get a stomachache when I drink water, and I don't have to worry about Carmen getting one either. Thank you for the books you have loaned or given to Carmen. She reads about 2- 5 chapter books a day, along with several picture books, so we do run out of material sometimes. Carmen also loves the craft stuff! This is harder for her to do now, but she still does it about every other day. She has requested a trip to Michael's tomorrow. Hopefully we can make it! Thank you for all of your notes. Carmen enjoys reading them. Visitors are always welcome. We are not sure how much time Carmen has left. It seems like every day some new disturbing thing comes up. Carmen may not always look like she is enjoying company, but she does. She is just very uncomfortable. Your prayers continue to strengthen and guide us, thank you for those.

This is Carmen when she is around four years old.
We talked to the doctor today. We saw Carmen's scan. It was pretty shocking. She has about ten different tumors in her brain, and a collection of metastases at the bottom of her spine. Her Doctor is shocked also. He is also shocked that she is so comfortable. We are so grateful for that. He tells us she has weeks to maybe a couple months to live. He is offering a phase two trial as our best hope of prolonging her life. He says this may buy us a couple more months. I am torn at this point as to what to do. Carmen wants to fight. My only concern is that she is going to be miserable. A phase two trial is a treatment that is not totally brand new, but has only been tested on a few patients. This particular one would have a drug that would inhibit blood vessel growth coupled with a chemo drug that she has not tried yet. Reed and I are going to pray and look at all our options including the phase one trials (brand new never been tested), which the doctor does not recommend, and hopefully have a decision made by the end of this week.
Thank you to all of you for fixing up my house, and restocking my cupboards. It was fun to come home to. We are not overloaded with visitors, so anyone who would like to come visit is welcome to.
We know God is watching over us. Carmen is wiser than most adults. She is comfortable and happy still and still looks forward to her future. Carmen says she is learning courage. We love her very much.

This is Carmen about a year before her diagnosis. She is about six years old.
We got the results back from Carmen's MRI yesterday. From what I understand, she has another tumor in her brain, and the cancer has spread through her spine, but instead of just being in one spot on her spine like it was the first time, there are several spots throughout her spine. This is of course terrible news. We will meet with the doctor on Monday to see what our options are now. Carmen is happy and comfortable now, which makes things much easier. Keep praying for us. We are so grateful to everyone for all that you have done for us. You cannot imagine how much easier things are when you know other people care about you, are praying for you, and love you. I'll write again on Tuesday after talking to the doctor.

This is a picture of Carmen when she was about three. She is dressed up as Mary.
This week has been hard. We have gone back to wearing pull-ups and using the wheelchair. In the beginning of the week she had pain that would wake her in the middle of the night. That has gone away. Thank goodness. All through the week we have had trouble controlling her nausea. She was responding well to Zofran at first, but now nothing seems to be helping. She has good moments throughout the day, but every day is a pretty big challenge for her. She has lost her strength and Reed and I carry her if she needs to go somewhere. We are so happy for the good moments we have every day! She is a strong girl and never complains about this happening to her, and never asks "why me?". Even when she is at her worst, she seems to understand that this is a part of her life, and only complains about the pain that sometimes hits her. We will have an MRI sometime this week, to see if the tumor has grown or shrunk. Her blood test last week looked great, and she will have another one tomorrow. Thank you for all your prayers. We know this would be much harder without them. We know God is watching over Carmen.

I chose this picture to remind me of what a happy girl Carmen usually is. She has had a hard past few days. She has no energy, and hardly eats three bites of food a day. When she does try to eat or drink, she throws it right back up again. This is very hard on her, and she tends to withdraw from everything when this happens. It is hard on me to watch my little girl go through these times. She has finally agreed that she needs her anti-emetic (nasuea) medicine. She hates taking, or even using medecine, so this is a big step for her. Tomorrow we will try that and see if it helps her. We have still had a fun and busy week. Carmen has spent her week shopping with her money from Grams (no matter how sick she is she loves to shop!), sewing, and coloring. We are enjoying our time together as a family, and tomorrow we will be back to school schedule. We are so grateful to all of you. We appreciate all the thoughtful gifts and cards that come to us. They help lift all of our spirits so much.