Feeling helpless

My heart aches for Mason's family. They are truly a wonderful bunch of people. Mason & Trey are polite, wonderful little men. I wish that there was something I could do to be helpful. They are in a miserable place. Please continue you prayers for comfort & strength for this family.

I went to see Mason today. I hope that I was not too much of an imposition on the family and that I did not over-stay my welcome. It was in a strange way comforting to be back "home" where I lived for essentially 2 years. I got to see some people who had become family but I had not seen in 3 months. I don't want to come off sounding selfish, but the hardest part for me was walking into Mason's room. It is the very room where Cameron died. Only a nurse was in there when I arrived so I was able to take a moment for composure before Mason & his family arrived.

I learned 2 things about myself today 1) I am ok. and 2) I'm better at taking care of other people than I am myself.

Terrible news

Stolen from Mason's page:


"Diane Blansett here again… Andrea called about 2:30CST. They have received some of the test results. The news is very grave - the cancer is back. The Central Nervous System is fully involved, 68%, and anything greater than 50% is considered strongly positive. The doctors are still looking at the bone marrow, but because his platelets keep decreasing, they suspect that it is also in the bone marrow. If it is, there is no treatment. If it is just in the central nervous system, the doctors will explore clinical trials that seem to be having promising results. They will begin radiation tomorrow in limited amounts to give Mason some relief.

Andrea told me that she and Eddie have prayed as a couple and prayed with Mason. They all know that Mason belongs to God and has been on loan, a temporary gift from God. Eddie and Andrea have agreed that they will not put Mason through painful treatments. They are at peace with this decision.

Mason has had some moments of coherency this afternoon. He and Eddie and Andrea have been able to laugh a little and to truly enjoy one another’s company. What a gift! Andrea was about to go get Trey and explain everything to him. They need some family time, so Andrea asked that you please continue to pray, PRAY FOR A MIRACLE, but they are asking that you please not call or come by for the next day or two. She will post when she is ready for calls or visits. She will try to check emails and posts at least once a day, so that would be a good way for you to let them know how much you care and that you are continuing to lift them up to God. Andrea said to stress that they really do feel your prayers. They know that’s it’s because of them and God’s goodness that they have had a good afternoon with Mason."


I don't have anything to add.
Lori

Prayer Requests & Winter weather

Please remember our friends today as they are undergoing testing where hopefully relapse will be ruled-out. www.caringbridge.org/visit/daveyarnott and http://caringbridge.org/visit/masonwoods Both are scheduled for bone marrow aspirations and lp's to check their spinal fluid later today.


EDITED: MASON'S TEST HAS BEEN POSTPONED UNTIL TOMORROW DUE TO INCREASED SPINAL PRESSURE IN HIS BRAIN.


This picture was taken 2 years ago today. Cameron was 3 days post-first-transplant. He was feeling good & eating like mad. I miss him.

These pictures were taken this morning off my porch. The weather has been bizarre. After several inches of snow yesterday, we had hours worth of freezing rain and ice. There is at least an inch of ice on top of the snow. Now, it is starting to snow again and we are expected to get 3-4 inches on top of the ice. We are under a Level 3 snow emergency (no driving). I'm hoping it clears off a little by tomorrow. I really should go to work this week....

Likely story

Sick on a snow day? Right...... Seriously though. I was sick today. Nothing major, but yucky enough to stay home & in my pj's. I did venture onto our second floor porch to take a few pics of Sam riding her sled in the park across from our house. Gotta love the zoom on my camera.

She had to take her baby doll "Billy" with her. He is named for the main character in the animated Christmas movie "Annabelle's Wish." A story narrated by Randy Travis about a little boy who lost his parents in a fire, loses his ability to speak & gets a calf for Christmas. We've watched it at least 100 times. Cameron loved it too.

Why do children's movies always kill off one or both of the parents? Even happened in "Hotel for Dogs." I guess it started with "Bambi." Since then we've had "Full House," "Cinderella," "Nemo," and "Ice Age" to name a few off the top of my head.

Samantha loves to dance with poles. Great. She saw me on the porch & shouted "Look Mommy I'm dancing with a pole." At least she had some clothes on. I told her to get back on the sled.

From my angle & distance, I couldn't get a good picture of her sliding down the hill, only walking back up. For those who know my house, these pictures are taken at quite a distance. I hope they print well. Maybe next time I'll feel like going out with her & get some of her riding down the hill.

Hoping for better weather tomorrow.....

Lori

*************

Edited to ask for prayers for our friend Mason: http://caringbridge.org/visit/masonwoods

He is more than one year post-transplant, but there are now concerns about relapse. His mom Andrea has been so kind to us, she ran out for vanilla ice cream and orange yogurt for Cameron when it was all he wanted to eat.

Random items

First, our review of "Hotel for Dogs." It comes highly recommended by the 5 year old set. Of course, every movie that Samantha sees is her favorite. She loves the whole theater experience. She is now asking to see "Mall Cop." If anyone has seen it, please let me know how it was & if it is inappropriate for a little girl.

On the motorcycle front, we don't have much information yet. Seems as though people are on the move making them difficult to question. I was confronted by their mother in front of our house Friday evening after work (intimidation of a witness??). She tells me they are "good boys who would never steal." Of course, the municipal court website begs to differ..... Maybe she didn't realize that stuff is public information and easily accessed by anyone with internet & interest.



Todays pictures:



Christian, Grandma & Cameron. This picture was taken in November 2003. Cameron loved his grandma.



The date on this picture is wrong. It was taken on Samantha's 2nd birthday in November 2005. She had a party with her cousins at McDonald's. After the party, Ian & Christian spent the night & the 3 boys had a tea party with her in the living room.

Until next time.....

Lori

An anniversary of sorts

Today marks 2 years since Cameron's first transplant. It is hard to believe how much has happened in these 2 years. At the time, it felt like time had stood still. Looking back it is such a blur.






He looks so little to me in that big bed. You can see Samantha's marrow in the upper left of the picture. I personally didn't expect it to be so bright red.

This is the cord blood. The chemicals used to preserve it are smelly - like rotten eggs. Despite the huge amounts of chemo, he did not loose all of his hair. It was thin & fine, but still there.

Samantha after getting back from the OR. She had some pain & was still sleepy. She was content with her Care Bears, 3 pacifiers & Grandma Ermal was right by her side the whole time to get her whatever she desired (like balloons, Sprite and chocolate pudding).

Saturday pics of the day

This is Cameron's first day of 2nd grade (late August 2006) - you can tell because his shoes are still white. That only lasted about a day.

Samantha is generally a good sport, but at this point she had had enough. It was December 2006, just a week or so before Christmas. Cameron was just of the the PICU because of pneumonia and we were in the midst of preparation for his 1st transplant. She wanted to see Cam, but she had a runny nose, so we couldn't take the risk. This is the resulting melt-down. Her melt-downs are infrequent. I just happened to have a camera with me for this one.

This was taken in August 2007 at the Coolville Founder's Day Parade. Everyone cheered when he went by because it had been a tough year for him and many people had not seen him since he relapsed. We didn't know what was to come. The shirt he is wearing in this picture will be part of the quilt that Ellie is making for us (for more information about that see Cameron's caringbridge site, the link is on this page under My Blogs).

We have a date with Gina & Kara to see Hotel for Dogs tomorrow - will update afterwards with Samantha's review.

Lori

Poem by Julian's mom

First heartbeats, First kicks, First hiccups,
You were in my belly, You were already mine, I already knew you …
First cry, First tender touch, First kiss,
You were finally here, You were perfect, I already loved you…
First smile, First tooth, First step,
You were so sweet, You were all I wanted, I’d always hug you …
First words, First drawings, First tricycle rides,
You were fast, You were so clever, I believed in you …
First big bed, First best friends, First questions,
You were growing, You were wondering, I always answered you…
First symptoms, First pains, First scary thoughts,
You were sick, You were scared, I’d hold on tight to you …
First hospital stay, First MRI, First surgery,
You were hurting, You were brave, I was always amazed by you…
First radiations, First Chemo, First feeding tube,
You were thinner, You were weaker, I was so worried about you…
First bad news, First breakdowns, First hopeless thoughts,
You relapsed, You were so little, I didn’t want to let go of you…
Last steps, Last meals, Last real hugs,
You were in pain, You were fading away, I couldn't believe it was you…
Last smiles, Last words, Last kisses,
You were scared, You were fighting, I couldn't stop looking at you…
Last painful breaths, Last heartbeats, Last bath,
You were gone, You ARE mine, I cant stop thinking of you…
First lonely nights, Last goodbyes, First empty hugs,
You are flying, You are free, And I am left here, without you...

Snow Day!

Technically, we already had the day off, but we still had a lot of fun today. It started with Christian spending the night. They had too much fun in their Spongebob pajamas.




We awoke to a few inches of snow. Samantha could not wait to get outside in it.

The first thing she wanted to do was to make a snow angel.

Her finished product:

After a long day, she was too tired to walk down the stairs to bed. She laid on the floor & read her Care Bears book until she fell asleep.

Have a great night.

Lori

Sunday pictures of the day.....

This has always been one of my favorite pictures of Cameron (I say that a lot don't I? It seems as though all of my pictures are favorites.) He was 6 when this was taken. It was early in his Tae Kwon Do career, but he was a natural at it. It did a lot for his confidence and stamina. I spent hours sitting on that wooden floor watching him. His last belt was a red/black. We have them displayed on an engraved belt rack.

This was taken Christmas 2006. Sam had just turned 3. We were waiting for admission for Cameron's first bone marrow transplant. He was weak & frail. Santa left some coal for Sam as she had been a typical demanding toddler. Cameron thought it was hysterical. Sam did not. She is able to laugh about it now, especially since the coal has been "recycled" through others' stockings. (BTW - she also got 12 pacifiers in that same stocking with the coal. We were forever losing them & despite being 3, we knew we were in for a long haul of hospitalization and they were going to be necessary.)

I didn't realize how much her hair has grown until I saw this picture. It is most of the way down her back now.

Also, please continue your prayers for our friends Matthew http://caringbridge.org/visit/matthewbarr His family had to cut their Make A Wish trip to Disney short. He is now in the PICU due to new seizures. Trey's family needs continued support and prayers for strength and comfort http://caringbridge.org/visit/treymartens

Thanks for reading.

Lori

Fortune cookie...

We had Chinese last night. Samantha is crazy about General Tso's chicken. At the end of the meal, the waitress brought out our fortune cookies. Their's were the usual you will find good fortune, etc. Mine however, basically said you need to exercise & go on a diet. Seriously people?!?! I know that, but I don't want to see it on my fortune cookie. Who else does this stuff happen to???

This is a picture Cameron & his cousin Ian taken in February 2005. Cameron adored Ian and in turn Ian was always great with him & Samantha. They were more like brothers than cousins except they never fought. Ian was always patient & willing to teach Cameron how to do things. He spent many nights with us in Columbus at the Ronald McDonald House. I worry about Ian. This has been very hard on him too.

Lori

I have nothing to say....

so, I'm just going to share a few pictures tonight.




This picture was taken 6-21-08. They both loved Kung Fu Panda. Cameron was always good to read to Sam.

This picture was taken 10-2-06. Samantha picked these flowers for me from my Mom's garden. Sam was not quite 3.

This picture was taken 9-16-06. Cameron was proud to move up another belt.

Thanks for looking.

Lori

Finally a lead.....

Finally, a lead regarding Cameron's motorcycle. I had just about given up hope of every getting back. I'm trying not to get too excited, but we are certainly closer than we were just yesterday. This picture was taken on his 5th birthday when he first got the motorcycle. Always the reserved one, he hardly broke a smile though he did tear up when he saw it. He was so surprised. A few weeks later, he added "2" stickers to the number plates.

This is a picture of Samantha and my mom taken when Sam was 2 days old. They had a very special bond. Samantha misses her so much. At times, she is a little jealous that Cameron "gets to be with grandma now."

Also, please keep our friends Matthew http://caringbridge.org/visit/matthewbarr & Trey http://caringbridge.org/visit/treymartens in your thougts & prayers. Matthew's relapse was confirmed yesterday. He & his family left today for a Make A Wish trip to Disney.

Lori

Could use some advice....

Samantha has always had her own sense of style. Last year for Halloween, I took her costume shopping. I headed for the princess aisle, but she wanted nothing to do with that. I think that was because those are her everyday clothes. Eventually she decided to be "Mike" from Monster's Inc. She wore the monster feet at her ice skating class, but for trick or treat, she went with her ruby red Dorothy slippers.

This weekend, Sam developed a runny nose. (Gina these symptoms came on after our trip to the theater!) I was trying to ask her if she had any other symptoms like ears hurting or sore throat. She got nearly hysterical. After calming down, she told me that she didn't want to be sick like bubby. We had a long talk about bad cells & how she has different blood than her brother & that everyone gets sick. I'm not sure she was convinced. I called her pediatrician and a hospice nurse from J5 for advice and recommendations regarding resources for siblings. I don't want to over-react, but I don't want to under-react either. I've also asked a friend who lost her brother to cancer to talk with Samantha.

When I got home from work, she showed me this picture she painted in school:

She told me that it is a picture of "bubby when he was sick. He has none hair." I want to do the right thing, but I don't know exactly what that is. I think taking her to a counselor right now would cause her more anxiety. I may try to reach the school social worker next week - this is a short week for the kids. Her teacher says there are no behavioral problems, that she seems well-adjusted & happy. Any advice would be appreciated.

Samantha

Samantha was always Cameron's biggest cheerleader. This picture was taken during the 2006 football season. Her cheers echoed through the valley.





Tonight Sam was talking to me tonight & it made me so sad. She was saying things like "I'm not as good as bubby" and "I'm not as smart as bubby." I know she has heard so many people talking about Cameron and what a wonderful boy he was. I always try to tell her how special she is too but I don't think she quite believes me. I didn't think we would have self-esteem issues until her teen years.

Until next time

Lori

January 8th

Today's picture was taken in May 2008 in front of my rhododendren bush. I have taken Cameron's picture in front of it's blooms since he could stand.

********************

10 long weeks today. I'm not sure how this can be. The emotions are still so raw, it feels like yesterday. I am so physically and emotionally exhausted, it feels like a lifetime ago.



I've always felt that Samantha was an "old soul." She makes comments like "when I was the mommy I did......" or "when I had my baby....." It doesn't seem as though she is playing make believe. She feels these prior events. Tonight, I was asking her about her day. She started telling me a long tale about how she and "bubby" played with her toys and watched Wall-E on her dvd player. She said "grandma was here for a minute but then she had to go." I want to ask so many questions, but I don't want to steer or influence her experiences. She is not at all troubled by them. They seem perfectly normal to her. I have to admit I am jealous. I wish I had them too.


*****************

Tonight, we are asking for prayers for our friend Matthew. His caringbridge site is: http://caringbridge.org/visit/matthewbarr He had a bone marrow transplant this summer. We were in the hospital at many of the same times. He has to have an MRI next week to get more information about a new spot in his brain. We are praying this is nothing bad.

Until next time
Lori

My football player

This picture was taken in fall 2007, just before Cameron's third relapse. We struggled with the decision of him playing. We were openly criticized by other parents for allowing him to play less than a year after his first transplant. He repeatedly asked if he could play. He hardly asked us for anything. He had the full support of his doctor and nurse practitioner. It was hard to explain to those parents that there is not a causal relationship between football and leukemia. I think it was really good for him - it did increase his strength and endurance & it made him very happy. I'm so glad we let him play, one less thing to feel guilty about.

Cameron was shy and modest. He loved this picture of himself. When he saw it, he made it the background on my laptop and titled it "The Man Who Brought Football to America."

Thanks to Jodie for helping me with the picture sizing. My apologies to Jodie for mis-spelling her name,

Tuesday

Samantha has been begging to see "Marley & Me" since they began airring the previews in early December. I have put her off because I knew how the movie ended and wasn't really interested in a tear-jerker. Finally, I told her how the movie ends & after a week she was still asking to see it. So, Sunday afternoon off we went to see it. She was riveted. She never got out of her seat one time. As I was watching it, I thought this chick-flick is way over her head. She loved it. We got in the car I asked if she liked it or if she was a little bored. She said "I Love Marley. I want to see it again. Can we go to Taco Bell?" We went to Taco Bell. She did not seem at all impacted by either of the 2 scenes I found to be disturbing. I guess she has seen so much in her life that movie drama has little effect (I'm sure this will change with puberty). The good news is now I have someone to see chick-flicks with since I can't get Eric to go to them. He would complain that I won't go to science fiction or war movies.

As you will learn from this blog, I love taking pictures. Especially of my babies. I plan to share a pic or 2 every time I post. I have no concerns of running out of pictures to share.

This picture was taken in May 2003. My little fighter. We still have the gloves & they still make the noise. I miss him. The glimpse of his "tubies" at the bottom of his shirt breaks my heart.



Samantha is afraid of clowns. Especially Ronald McDonald. Even his statue.


This picture may be too wide too. If someone can help me with editing these I would appreciate it. Here is the link: http://i204.photobucket.com/albums/bb44/ellebe12345/P4100008.jpg

Thanks for reading.
Lori

Impaired Santa

We have wonderful neighbors. They have all gone the extra mile during this time of trial for our family. One family arranged for Santa to come to our house on Christmas Eve & to bring some gifts they had purchased for Samantha. Imagine our surprise when Santa arrived a day early (12/23) & drinking from a mason jar. Samantha thought he was "very jolly" as he sang along with her.


The funniest part of this picture (in my opinion) is my 10 year old nephew in the background. Wonder what he is thinking?

Edited to add that I can only see half of the picture on my screen - here is the link:

http://i204.photobucket.com/albums/bb44/ellebe12345/067.jpg

I guess the answer is yes.....

Seems like I am going to blog. At least I am today.

I've been trying to decide on a New Year's resolution. I realize I am a few days late in making this decision, but I guess better late than never. 2008 was such a horrific year it is going to take very little for 2009 to be an improvement. Part of my delay is making a resolution is that it represents another step forward, another step without my Cameron. Holding on to the past would frankly be easier, but completely unfair to Samantha. Illness, hospitals and death are about all she has known in her five short years. We've tried to show her fun & joy but we had so many limitations and restrictions with Cam with everything from food, vacations, pets. I know she has felt like she has always taken the backseat so maybe a simple resolution (read one that I won't break like more exercise, better diet, etc.) would be to show her just how important she is to me. Even when she is needy, whiny and clingy like she has been the past several days. This is very hard for her. She lost her brother & her grandma within 31 days of each other. She loved them both so much. She asks questions that I can't answer like "why did bubby have to get sick?" Yesterday, she was playing "funeral" with her dolls. Breaks my heart that I can't take her hurt away. Then I get impatient with her as she asks the same hard questions over & over. Especially now that I have gone back to work, I am so physically & emotionally exhausted at the end of the day, so I snap at her, tell her to wait too often, tell her that mommy just doesn't feel like playing/reading/cooking. More guilt. I'm good at that.

Ok, enough is enough. Next time I'll tell the story of impaired Santa.

Thanks for reading.

A favorite picture of me & my boy:

http://i204.photobucket.com/albums/bb44/ellebe12345/Childrens208020-1.jpg



My little princess on her birthday:

Guess it is time.....

to move here from Caringbridge. I've been posting there for almost a year, feels like home in a way. Much like Children's Hospital was my home for over 5 1/2 years. I'm not going to re-cap 2008 - much too painful. For those who want to catch up go to http://www.caringbridge.org/visit/cameronbrown

If you can't tell by the title of this blog (Am I really going to blog?) I'm not convinced I'm going to keep at this. It is cathertic for me. Sometimes life is very lonely arond here.

So, first post down. Will update with real stuff later on.