Doctors consider small changes to be stable

"Fighting " 12x16 painting by my blind 4 year old Jimmy

Jimmy is doing pretty good right now, We are just waiting for his next MRI the second week of December to see if whatever it is in his head is growing or not. If they grow then they are tumors if they don't grow then they are just scar tissue.

Doctors are interesting people, they consider a change of 20% or less to be "stable" so you could actually have a slow growing tumor be "stable" and think it is not growing when it is actually growing, just very slowly. That is why we always insist that the radiologist check his MRIs against several scans that we have done in the past, not just the most recent scans. Well it seems to be the same with Opthamologists. Jimmy went to Dr. Hoffman last week and we were told yet again that there was no change in his vision. When I asked specifically what his vision was he told us that he still can't see out of his right eye and his left eve is 20/125 with peripheral vision loss and limited color perception. his vision used to be 20/200 I asked him why he considered this no change. He said last time his vision was 20/150 and 20/125 is not really much different. Jimmy's vision has been slowly improving over the past 2 years but not enough to be considered a change when tested every 3 months. The good news is that his vision is slowly improving when we were told that it would probably never get any better. I'm rooting for those optic nerves to grow!

You can have anything you want

Sailing 5"X7" watercolor

My husband took me to San Francisco a couple of months ago to visit some of his relatives. While we were there some of his cousins took us sailing on the bay. It was the highlight of the trip! It was so relaxing. I really needed the break. While we were sailing I took t little picture of a sailboat. I painted it last night.

While we were in San Francisco my husband, took me into a jewelery store and said "what do you want? I'll buy you anything you want." (he was either feeling really rich or he knows me too well) I looked around for a few minutes and told him I did not want anything. It's not that I don't like jewelery, I love it! I just at that I really didn't want anything more. I have all the important stuff in life and I am quite content with what I have. Sometimes possessions can seem like a burden. The gift he gave me is: now I have a real cool story I can brag about to my friends about what a cool husband I have.

Now if he had offered me art supplies.....

Work in progress - kitchen tile mural

Here is the beginning sketch for a tile mural to go above a kitchen sink, The client I am doing this for wanted a window over her sink that she could look out of, since that was not possible I am doing a tile mural of a window for the backsplash above her kitchen sink. Her kitchen is all done in fall colors, so I have tried to incorporate them as much as possible. I added a little finch on the windowsill looking out just for interest. and the mountains are the ones she would have seen from the neighborhood she grew up in. this mural will be very large - 35 tiles! It will take a long time to paint because of its size and how many times I will have to fire it in the kiln. as a result this will be a long drawn out work in progress. but I'll post more images of this project as it comes along.

November

Autumn Reflections 3.5"x2.5" Card

I can't believe it is November already! This time of year always makes me feel so melancholy. Fall is kind of a sad season smoshed in there between my beloved summer and wonderful winter. The leaves are falling from the trees that always makes me think of endings and goodbyes, the birds have flown away, and it is beginning to feel a little chilly, I even have to start wearing shoes again. On the bright side Christmas is around the corner! I usually try to hold back on the Christmas music & decorations until after Thanksgiving but I think I'll give in to my Christmas lust and play a few carols today, and while I'm at it I'll wish for a little snow.

Whats good about having a sibling with cancer

"Fort San Juan" -5x7 watercolor

Ok, so I read my last post, how depressing! Now I'll list some of the lessons my children have learned as a result of their brother having a brain tumor.

Compassion: my children have learned to be more compassionate since this all began. My sons all shaved their heads when Jimmy had to have his head shaved before surgery. My Oldest boy (then 14) has become a friend and comfort for three kids at his school whose parents were battling and loosing to cancer.

Giving: My sons have all seen how generous people have been to them with gifts and acts of service and it has made them want to help others in similar ways. They know how very much the generosity of others has helped them and they want to do the same for those who may be in need. They are more aware of the suffering of others and they want to do something about it.

Gratitude: they have learned to be grateful for the little things in life, instead of being jealous of Jimmy's new Game boy DS, his brothers are talking about how glad they are he has it and how cool it will be when they have enough money saved up so they have one and can play against each other.

Tolerance: My boys have seen their little brother unable to walk or talk after surgeries. They have seen him half bald from radiation with ugly scars and radiation burns criss-crossing his head. They have seen him having to wear a helmet all the time because half his skull was missing. They have helped him up after he fell down stairs because he could not see. I know my boys would never make fun of someone because of their appearance or disability.

I truly do think that the experiences that my sons have had with their brothers brain tumor has made them better people.

Why it stinks be a sibling of a kid with cancer

Yupo Hybiscus 8x10 watercolor

We got a call from Primary Children's Medical Center on Friday. Someone had tickets to the Hanna Montana Concert that they wanted to donate to kids from the hospital. They asked if Jimmy would like to go, of course Jimmy was excited and said yes! I was not even sure he knew who Hanna Montana was but he immediately started singing "Best of Both Worlds" and dancing around. He was given 2 tickets for the show (for him and a parent) he took his dad. while he was there they fed him very well and they gave him a Nintendo gameboy DS which is very cool for him, he is stuck on the bus to and from his school (Utah School for the Blind) for over two hours a day.

However, it is not so cool for his brothers. Jimmy's two oldest brothers have really been wanting a Nintendo DS for over year now, my 13 year old has even been mowing lawns all summer and saving his money and almost has enough to buy a DS, and Jimmy comes home from a free concert with one. It does cause a little resentment and jealousy. It also causes a little paternal distress. Thankfully Jimmy announced that this DS is for everyone to share, he just wants it for the bus ride and everyone else can take turns playing it. He is a pretty cool kid sometimes.

It just reminds me of how hard it is to bee the sibling of a kid with cancer. First of all when your sibling has cancer there is all the jealousy from the gifts and attention your sibling gets, when my boys go trick or treating people will give hand fulls of candy to Jimmy and just one piece to his brothers. My older boys can usually understand this but it is really hard for my younger boys. Then there is all the worry and sorrow you feel for your sibling you have to watch him suffer and there is nothing you can do about it. Also the extra responsibility, my older boys suddenly had to become "substitute parents" when their Mom and Dad where at the Hospital all the time and they couldn't complain to their parents because their parents were't home. When we were home we were so emotionally drained that we Were no good. My boys started making Jokes about mom crying all the time and I thought I had hidden it so very well. Then when your sibling has cancer you don't know what is going on, we thought we had been trying to keep our kids informed but we were also trying to protect them, so we didn't tell them when we thought Jimmy wasn't going to make it. My older boys somehow know we were not telling them everything.

How does a kid handle something like that? Well my oldest two boys, then 13 and 11 years old went from being straight A students to D and F students. My oldest started having migraine headaches from the stress and my second oldest started worrying about the future, constantly asking if there was there something we didn't tell him. My 7 year old went from being the most generous caring child to being mean, spiteful and angry all the time. Jimmy's brothers are finally settling back into their lives and getting back to normal. So when we are faced with this possible recurrence one of my first thoughts was to worry about what this will do to Jimmy's brothers.

Finding Happiness

White Tulip 2.5"x3.5"

When Jimmy had his MRI last week the radiologist asked us to come into his office where he showed us images from Jimmys MRI. He told us as gently as possible that he thought Jimmy has had a re-occurrence of his brain tumor. I was sick and in shock, as I stood up to leave I said "Thank You" the Doctor looked at me rather strangely I suppose he had never been thanked for telling someone such devastating news before, I thought about it, did I say thank you because it is a habit? Yes, probably, but did I mean it? yes, I did. It has to be a very difficult job telling people what will be possibly the worst news they will ever hear in their life, and he took special care and made an effort to lesson the blow as much as he could.

So I have been thinking about gratitude lately. I believe it is one of the keys to being happy. every time I'm feeling depressed I start thinking about what there is to be grateful for and it changes my perspective. I'm grateful for the last two years I have had with my little Jimmy, when his brain tumor was diagnosed we did not think he was going to make it. I am grateful for the kindness of friends who are always there when I need them, neighbors who went grocery shopping for me when Jimmy was in the ICU, left anonymous gifts at our door, and babysat at a moments notice when I had to run to the emergency room. I am grateful for the kindness of strangers, people who we have never met who sent us on a make-a wish trip to disney world, people who donate toys and teddy bears to Primary Childrens Medical Center so there will be something for my children to play with. I am grateful that everything we have been through has made us a stronger, more compassionate family.

Attitude adjustment about life

"Fragrant Memory" 8x10 Watercolor

I have been totally depressed, I had that nauseous feeling in the pit of my stomach, unable to sleep. My husband and I took the day off to go to the temple, I really needed some comfort. I was so filled with anguish and worry, not only for my little Jimmy but also for his brothers. Siblings are the silent victims of childhood cancer, but that is another story.

As my husband and I were talking he told me something that put it all into perspective, It was exactly what I needed to hear. (did I ever tell you that I married a genius) He told me that we have 2 months to wait to find out if this is a re-occurrence of Jimmy's brain tumor, If we spent the next two months worrying and scared and miserable and it is a re-occurrence then we had just waisted precious time with him. If it was not a re-occurrence then we have spent all that time miserable for nothing. He was absolutely right! We never know what the future will bring, any of our loved ones could be taken at any time, the trick is to enjoy what we have while we have it.

I am grateful for the last two years I have been given with Jimmy, there was a time when we did not think he would make it. I will remember to treasure all the moments with everyone I love and truly enjoy what I have been given. So today I will go and laugh with my children and bask in the joy of being their mother.

here is a poem from another brain tumor parent

To My child...

Just for this morning, I am going to smile when I see your face and laugh when I feel like crying. Just for the morning, I will let you choose what you want to wear and smile and say how perfect it is. Just for this morning I am going to step over the laundry and pick you up and take you to the park to play. Just for this morning I will leave the dishes in the sink and let you teach me how to put that puzzle of yours together. Just for this afternoon I will unplug the telephone and keep the computer off and sit with you in the backyard and blow bubbles. Just for this afternoon I will not yell once, not even a tiny grumble when you scream and whine for icecream, and I will buy you one if the icecream truck comes by. Just for this afternoon, I won't worry about what you are going to be when you grow up, or second guess every decision I have made where you are concerned. Just for this afternoon, I will let you help me bake cookies, and I won't stand over you trying to fix them. Just for this afternoon, I will take us to McDonald's and buy us both a Happy Meal so you can have both toys. Just for this evening, I will hold you in my arms and tell you a story about how you were born and how much I love you. Just for this evening, I will let you splash in the tub and not get angry. Just for this evening I will let you stay up late while we sit on the porch and count all the stars. Just for this evening I will snuggle beside you for hours and miss my favorite t.v. shows. Just for this evening when I run my fingers through your hair as you pray, I will simply be grateful that God has given me the greatest gift ever given. I will think about the mothers and fathers who are searching for their missing children, the mothers and fathers who are visiting their children's graves instead of their bedrooms, and mothers and fathers who are in the hospital watching their children suffer senselessly. And when I kiss you goodnight I will hold you a little tighter, a little longer. It is then, that I will thank God for you, and ask him for nothing. Except one more day...

Bad News

Did you ever feel you woke up in your worst nightmare?

We have had some bad news. My little 6 year old Jimmy's MRI showed 2 "spots." His last MRI, 4 months ago, showed 1 teeny tiny spot they thought was scar tissue or something. His MRI this week showed the same spot still tiny, but bigger and another spot as well.

It is possible that this is just scar tissue and the MRI caught it just right to make it seem bigger and it is possible he got more contrast to make it seem brighter. The radiologist seemed concerned, the oncologist was very reassuring, but still wanted to do another MRI in two months instead of 4 months. His neurosurgeon Dr. Brockmyer, is out until Monday, I really want his opinion on this, he is almost painfully honest in his opinion but, I know he will tell me the truth and not sugar coat it. I feel that is what I need right now I need to know. That is one thing I can't have for at least 2 months.

If it is a recurrence it is very bad news. We can't do radiation, He has already had his lifetime maximum of radiation. And chemo does not usually have much of an effect on ependymomas.

Oh yeah, and the art show

Oriental Lilly watercolor on Yupo

Wow, I have been so busy and stressed out I forgot to mention I have my first solo art show!
Come and have a peek at my stuff!

Ruth Tyler Art Nook - 8280 S. 75 West, Midvale UT - From Sept 1 - Oct 31, 2007

How I spent my summer vacation

Now to catch you up on all the stuff we did this summer...

we never did take a family vacation this year but we managed to spend some time together.

At the beginning of the summer we looked at our calendar and discovered that we did not have one single weekend that someone wasn't busy, no time for a family vacation! What we did do is... Between our four sons age 6 to 15 we had 10 assorted overnight week long summer camps, scout camps, etc. (Camp Hobe: for kids with cancer and their siblings, was their favorite) a church family overnight camp out, week-long pioneer trek for the 3 oldest family members, Ducky Derby: fundraiser for Make-a-Wish, Ride for Kids: Pediatric brain tumor foundation fundraiser, A golf tourniment fundraiser for Primary Childrens Medical Center, a family reunion, our 25 year high school reunion that we were in charge of, My brothers wedding, I somehow got put in charge of the reception. Our flooded basement we have completely redone, and assorted summer school, swimming lessons, Dr. appointments, MRIs etc. The kids have been back in school for a month and I still feel tired.

Jimmy with the pirate eyepatch at the Ducky Derby

Jimmy with local sportscaster Rob Zundell and the Jazz Bear at the Golf tournament.

It's about time!

yeah yeah, I know I've been a slacker, I havent written for EVER. Sorry, but really I have a good excuse, or a good story anyway.

We went out of town in July to the middle of Wyoming to do a little handcart pioneer reinactment. We were having lots of fun camping in the dust and pulling handcarts in the 100 degree weather. When we got home there was a big surprise: the pipe under my kitchen sink had broken and it flooded my basement. My parents were checking on our house descovered the flooded home, they called a disaster cleanup company, and boy did they clean up. We came home to an extremely empty basement-the basement celing had fallen in, so there was no celing, all the carpeting was gone as well as some walls. Everything that was in our basement was now on our lawn, computers desks, all my art supplies, TV, all the clothes from the laundry room, everyting from the storage, furniture, etc. Because of this I was without a computer for about a month, and by the time I checked my website I foud that my domain name registration had expired and someone else had bought my domain name, so now I have a new studio, a new basement, and a new website: ArtistMelody.com

Doodling

Doodle ACEO 2.5" x 3.5" for sale on ebay

Here is a doodle I drew, I just started doodling and one thing leads to another. It is kind of interesting to see where my mind was going. I sat down during my sons swimming lessons and just doodled. as you can see my mind does not stay on one subject for long. It started with the dog, then he had to have a dog house, the tiles on the roof looked like waves in the ocean...there should be a fish in the water and maybe someone is fishing, but the worm escaped... you can see where it goes from there.

The War in Arizona

"Making Sand Angels" ACEO 2.5" x 3.5"

I was waiting in line at Wendy's with Jimmy at lunchtime yesterday when in walked two soldiers in full camouflage uniform.

Jimmy whispered to me " Why are those guys dressed like soldiers?"

I replied "Because they are soldiers"

He was very impressed. He thought for a moment and then asked me "If they are soldiers then how come they are not fighting the bad guys in the war in Arizona?"

~ I guess my kindergartner needs a lesson in geography

Jumping Jimminy

"Beehive Hairdo" watercolor ACEO 2.5" x 3.5"

Jimmy just had his 4 month MRI to make sure his brain tumor is not growing back. The days before MRIs are so nerve wracking. It always reminds me of the day we discovered his brain tumor, not a day I like to remember. The time leading up to his MRIs are always filled with sleepless nights and stress filled days. So when we get the MRI done and they tell us it is "stable" we always take the kids out to dinner to celebrate.

Jimmy wanted to go to one of his favorite places, the Pie Pizzeria (He loves the fact that he can write on the walls without getting into trouble) Jimmy was "stirsty" (thirsty), I usually don't let my kids have drinks with caffeine in them, but I let him have a little of my diet coke to drink. We were about halfway through with dinner when Jimmy suddenly got up from his chair. I asked where he was going and he said he needed to jump. He proceeded to stand there and jump up and down about ten times then he sat down. My 13 year old son looked at Jimmy and then back at me and said accusingly "you didn't let him have caffeine did you?"