The plan + camera fun!

We took Alice to the oncologist today.  The plan for now is to get a urine sample every month and an MRI of head, neck and chest every 2 months just monitor things. If the levels of the VMA's and HMA's go up again in the urine samples, then we might need to scan her whole body via CT scan to see things further. If the levels stay good, then we just keep monitoring...for who knows how long!? Its seeming like Alice has the kind of Neuroblastoma that might go away on its own without any treatment! That's good news! Of course with anything medically related, there is never a 100% surety of what is going on...things just "seem" certain ways. So that's whats going on for now with Alice. We sure have felt lots of love coming our way these past couple of weeks and we very much appreciate the kind thoughts and prayers. We can definitely feel Heavenly Father's hand in this and an overwhelming sense of peace and love. We know He is watching over his little Alice and our little family! :)

This past weekend, we went on our daily walk(s) in the park(s) as a family.  We have recently installed Photoshop and some other editing software on our computer. These past couple of days I have been learning a little bit of how to use these programs! Its SO fun! I think I have a new hobby.  Here are the fruits of a couple hours of dinking around... I still have lots to learn, but I'm pretty pleased with my first attempts at editing. Enjoy! :)

Life

.Life is funny.  It seems like Life is a big ocean of waves...sometimes it swells with huge waves of excitement and happiness, sometimes it just glides along smoothly until another wave comes, and sometimes we get waves of trials.  Lately, we're riding on some unusual waves of both trial and excitement.  

Excitement...

Ben graduates next week! YAY! Finally! We are excited for this great accomplishment and for the next phase for Ben...finding a job/settling down somewhere/livin' the dream. For now, Ben will stay at his paid intership at Novell until he finds something else.

We have a new nephew! Adam and Kylie had their little baby boy this week and we are so excited for them!

We are having Alice's baby blessing next week and we are very excited to be celebrating both the graduation and blessing with lots of family who will be coming into town! 

Trial...

We found out Wednesday that Alice might have childhood cancer...Neuroblastoma.  We don't have an official diagnosis yet and we need to do a lot more tests and scans to find out more about what is going on exactly. For now, all we really know is that she likely has it.

Alice's story so far...
It all started because since birth, she has had one eye smaller than the other.  The pupil is small, the eyeball itself is a little smaller and the eyelid kind of droops down a little bit. At her 2 mo. checkup, the pediatrician referred me to a pediatric opthomologist, who checked out Alice's little eye and then suggested that we get an MRI.  He said it could be nothing and chances are small, but her eye might be like this due to a tumor on a nerve that affects the eye.  

The opthomologist relayed this info back to our pediatrician and our pediatrician wanted to get a urine test done to see if there were certain elements elevated which could indicate a tumor.  We got the lab results back on Monday and indeed, both markers they look for were elevated. 

So, Wednesday we took little Alice to get an MRI. Poor thing had to fast before her appointment at 6:30am. She had to be sedated with some medication via IV fluids. She did well and was drowsy for the rest of the day due to the sedation medication.

We left the MRI appointment at about 11:00am and headed up to Primary Children's Hospital in Salt Lake to meet with an Oncologist. Our pediatrician made the appointment for us after he got the results from the urine test. As we waited for our appointment in the waiting room of the oncology dept., Ben and I looked at each other with a "This place is kind of sad" look. There was definitely a different feeling in there. It was a mix of hope and love with sadness and suffering. Overhearing people talking about bone marrow transplants and big medical words that sound scary was a little overwhelming.  Alice seems healthy and strong...its just her little eye that is her only symptom. Seeing some of these small children with no hair from chemo or pic lines in their arms was really sad and overwhelming for us.

We finally got called back to an exam room and talked to a Dr. He just got a general history of Alice's health and did some checkup type things like you would see any Dr. do at a well-child checkup. Then he left the room to go see the results of the MRI and talk to the attending Dr. We waited in that room for over an hour. We were so exhausted from being up most the night plus waking up so early that we all dozed off for a few minutes.  When the Dr. finally came back in, he brought another Dr. with him.  I guess she was the attending doctor. He must be a resident or not as high up doctor or something. Anyways, this new doctor explained to us that the MRI showed a tiny little lymph node thing on a nerve in the neck, but didn't think it was anything of significance.

 Then she proceeded to tell us about Neuroblastoma and how it is a pretty mysterious cancer in children. It can manifest itself in so many different ways in so many different parts of the body.  Sometimes it even goes away by itself! In children under 1 it is very curable/treatable if it doesn't go away by itself. In kids 2 and above, it get a lot harder to treat.

After she told us about Neuroblastoma, she told us that they would like to do some more tests and scans on Alice to see whats really going on. There could be a tumor somewhere else. With this disease, tumors usually originate in the abdominal area. So she gave us some papers with all sorts of orders for all sorts of tests.

Before we left the hospital, we took Alice downstairs to the lab to have some blood drawn and another urine sample. We just got the results today and her urine test is now normal, but there are elevated levels of dopamine in the blood test. I guess that can also be an indicator of Neuroblastoma. This is now even more confusing! Why would the markers for a tumor be so elevated a couple of weeks ago and now be normal?

So basically, we still don't know much and we'll hear from the doctor probably tomorrow about what the next steps will be. Maybe this is a crazy fluke and maybe it is something more...either way, its pretty crazy.

August is going to be a crazy month, but we are very hopeful and very grateful that this was caught so early in Alice's life.  She is still happy and isn't showing any other major symptoms so that is comforting. For now, life goes on as normal except with a lot more doctor's visits. Ben and I are doing well and we feel the Lord has and will prepare us for what lies ahead...whatever that may be. We will continue to document this new journey on our blog as this story unfolds.

Our happy little girl giving us smiles! :)

We went to the Zoo......

 Maura's start to the Post......

Last Weekend was Pioneer Day.  "What is Pioneer Day", you ask? Well, it is a Utah state holiday and a day celebrated by members of The Church of Jesus Christ of Latter Day Saints to honor the pioneers who suffered great persecution crossing the plains to get to a place of peace where they could worship without fear.

Anyways, Ben had a 3-day school weekend, but unfortunately still had to work.  We had a great weekend though! We thought it was about time we took Merrilee to the zoo.  Lately she LOVES anything and everything that resembles an animal.  Any book with an animal, any dog she see's on a walk, any picture of an animal on a poster or sign...she loves.  So Saturday we geared up and headed up to Salt Lake Hogle Zoo.

Ben finishing the post.....

So....we went to the Zoo. I think it was a lot more work then anything else. For the first hour we went about 100 yards trying to keep the kids happy and fed. I like the zoo, at least as a kid I did. I was really excited once we got in because I thought "Cool I love seeing exotic animals and those funny monkeys!"


So first we go past the monkeys...all asleep. No funny monkeys. Then we went by the elephants. The baby elephant was moping around, but the mom was in the back corner with only her butt sticking out. (She was in the same position 3 hours later when we left the zoo). The rhinos were, well, rhino-y, really not doing much. Then we went to the Leopard, tiger, and wolf area! Nothing. The tiger just laid there, the leopard was hiding in the shade, and the wolf was just hiding. Then we saw the giraffe. Well first, we went into their waiting pen inside because it was air conditioned. Merrilee pushed the stroller up and down the aisles. She got mad when we left. It was really funny.

 The Giraffe's were cool. They didn't do much either, but the fact that they were so tall was cool. So after all that, we came to the camels. This was the day saver for me. The camel was walking around with its two funny humps flopping around. Even Merrilee kept saying, "What's that, whats that!?" over and over and over again.

 I guess we choose the part of the day that animals sleep. (Isn't that all of  the time? We saw a really cool bird show and the babies made it through it ok. The birds would fly right over our heads! I was grateful I didn't get pooped on, because there was a lot of pooping going on. I think it was worth the $9 a person to watch Merrilee chase a bird around and see the cool camel. I've concluded that Zoos are for kids and that parents get joy out of watching their kids interact with the animals. It would have been fun to watch Merrilee interact with the animals...if they were only awake. :)

Merrilee getting tired

The awesome bird show

Alice Enjoying the animals

Merrilee chasing around a bird

Our attempt at getting a picture of the girls together

Our attempt at getting a picture of the girls together