Hope's Proton Therapy

(The table where Hope's face and head are bolted down every day for an hour long treatment)

(The gold plated blocks specially made for Hope for the Proton beam radiation)

(Hope getting into position for her daily proton therapy)

So far Hope's therapy has gone well, with little to no side effects. The first day she got a headache, but after taking some Tylenol it went away. Besides the one headache, she says it has been no big deal. I talked to her on the phone on Christmas Eve and asked her if it was scary. She said it wasn't scary at all. Hope will get her treatment every day (no weekends) for 30 days, 1 hour a day. Thanks again for your continued prayers and support.

What is Proton Therapy?

If you are curious as to what Proton Therapy is, and how it works, here is a link to the MD Anderson Proton Therapy Center with an explanation:

http://www.mdanderson.org/patient-and-cancer-information/proton-therapy-center/what-is-proton-therapy/index.html

A letter from mom 12/12/2011

(at MD Anderson)

(in the lobby of their apartments)

(baking cookies in their apartment)

(mold to wear during radiation)

(mini Christmas)

(proton therapy)

Hi Y'all,

We love it here in Houston.  It's sunny every day.  Hope has not started her Proton radiation yet, hopefully this week.  We have met some really nice people and have a rental car to get around town.  Everything is pretty close.  The hospital is 5 minutes away.  So far we have experienced 3 really unforgettable outings:  1) The Butterfly Arberetum 2) The Zoo 3) Lakewood Christian Church (Joel Olstein). 

I miss everyone lots, but I also am loving it here.  I feel wierd not working, but it's nice to be able to focus totally on Hope and enjoy the experience in Houston as well :)

Hope is in great spirits and happy we are here.  She is eager to get the rest of this radiation treatment started and over! So far the doctors at MD Anderson are really great and on top of things.  The Texas Medical Center and Texas Childrens Cancer Center is an entire city in itself, pretty overwhelming!  Our apartment is very nice and cozy and has everything we need.

I will send more updates with pics as we can.  I wish everyone a Merry Christmas!  Hope to see ya soon!

Love n hugs, from Sheri & Hope in Houston

On their way to Texas!

Thanksgiving

Since we knew we were not going to spend most of the holiday season together, we decided to have a ton of fun on Thanksgiving! We spent all day in the kitchen in our aprons, with no schedule. It was so nice hanging out and cooking together (something we all love). Hope made the table look beautiful and even helped me with the turkey.

UPDATE

(last chemo: visit from NFL player Kendall Simmons and former NBA player Chris Dudley)

Hope has finished her chemo treatment and has started radiation. Her last round of chemo did not shrink the tumor at all, so it was important to get started on radiation treatments right away.
Because of the location of the tumor, there are many risks involved in doing the radiation treatment. Risks being: loss of vision, loss of memory, loss of hearing, stop of growth to the spinal chord, etc. Because the location of the radiation treatment is so delicate, the team of Doctor's in Oregon decided to send Hope to the MD Anderson Cancer Center in Houston, Texas. MD Anderson is a well know cancer center which people travel to from all over the world in order to receive treatment. They have better equipment there to treat Hope which will help cut risk. The original plan was for them to be there for seven weeks, but it has turned into a longer trip. Expectations now are that they will be home in mid February. They arrived in Texas the second week of December.

4th round of chemo

This round has not gone so well. This time Hope got sick the first night she was at the hospital. In a way it could have been prevented, but the nurses forgot to give her the medicine that helps prevent nausea.  So instead of passing time playing hospital bingo and doing arts and crafts, she spent it feeling extremely tired, emotional, crying easy, throwing up, and the back of her legs flared up with eczema. She had a terrible chest cough, her eyes were puffy and she wouldn't take her pills. It was a rough first night! I went to see her the next day expecting to see her in complete misery, but to my surprise she was doing well. This time the nurses remembered to give her all the appropriate medication...whew! When I arrived she was sitting in a chair that had wheels, tubes all attached to her, painting a haunted house that the art therapist had brought her. She was really hyper, she literally was bouncing in her seat, we kept thinking she was going to spin right off her chair. Not sure why she was so rambunctious, maybe all the sugar pumping through body. I was there for maybe an hour and she had to use the restroom probably a dozen times. At one point she turned to the nurse and asked "Are you sure you are giving me the medicine that helps me from not going to the bathroom every 10 minutes?" The nurse replied "yes, I am. I have been trying to get it regulated all day." Poor thing, every time she has to go to the restroom, it is such a big ordeal. They have to make sure there is a what they call a hat in the toilet, so they can monitor the protien levels in her urine. She has to be unpluged from a handful of outlets, untangle the millions of cords that are attached to her, wheel the tubes and liquids that can not be unattached, and have a couple people assist her. Talk about no personal space! Despite all this though she was still able to have fun and make us all laugh. She is still the sweet little sister she has always been. Way to hang in there Hope!

Robots

(Hope in her awesome robot costume)

(Jackie trying to be as cool as Hope)

(Hope and her cousins)

(the creator of the robot cake and present)

(robot cake)

(robot present)

Jackie turned 22 this year and to celebrate we decided to have a robot party. To help make this the ultimate robot party, Hope spent all day with her grandpa creating the world's best robot costume. This is just the kind of goofy things our family likes to do to celebrate another year of life!

Journey Bead Necklace

The children's hospital provides the kids a way to remember their journey as a patient in a fun and creative way, they create a "Journey Bead Necklace". Each bead on the necklace represents something different, and there is a bead for everything, every night you stay at the hospital, every time you pee in a cup, every time you get blood work done, a birthday bead, holiday beads, beads with letters, etc. One really neat thing is that every day you are at the hospital you get to pick either a "having a good day" bead or a "having a bad day" bead, through Hope's entire journey she has refused to pick a "bad day bead". She is so inspiring through this and continues to show us how to handle tough situations with a cheerful spirit. I have a feeling she will probably have several Journey Bead Necklaces once this is all done.

3rd Round of Chemo

The 3rd session of chemo was only 3 days this time. At this point it is beginning to feel more routine for Hope, she gets the same room and sees the same people every time. Hope is still doing remarkable, I still have yet to hear her complain. She is so accepting of what is going on and faces it with a positive attitude. Above is a picture of Hope with her chemo pal Ally, and a staff member Lynn, making a tie dye t-shirt.

Selena Gomez

(Hope, Selena Gomez, and my mom). 

Hope's favorite singer is Selena Gomez. Some friends were nice enough to get Hope tickets to her concert when she played here last week.  Hope had a great time, security moved them closer for the show and let them meet Selena after it was over. Selena was nice enough to let Hope take a picture with her and also signed her hat!

2nd round of chemo

( Hope & Annabella Baking)

(Hope getting a blood transfusion)

(In ICU getting her chemo treatment)

(such a trooper)

So far Hope's treatment has gone really well. Hope hasn't skipped a beat! I am really quite impressed with her ability to stay positive and cheerful.  The 2nd round of chemo was a higher dose, so she did get sick a couple of times while she was in the hospital. The hardest part really is how frequent she has to use the restroom. When she is under chemo treatments she goes off her pill for Diabetes Insipidus and is on a drip system instead. The drip system is not as good at balancing and regulating her hormones, causing her to go to the restroom every 10-15 minutes.  This also means she doesn't get a whole lot of sleep. Hope's blood counts have been low when she is at home, which requires staying at home and getting blood transfusions.  All that said, given the circumstances, she really has been feeling great. Thank you for keeping Hope in your prayers.

White Shirt Option

Hi everyone. Here is another shirt we are planning to order. We figured some guys may not want to wear a purple shirt with flowers, so we made one that is less feminine, but still ok for the ladies, with a slightly different message.  We plan on placing the next order of the purple design and the new design next Monday or Tuesday, so if you are still wanting a shirt and have not yet mentioned it please let me know sometime this week!

9th Birthday Bash

(hanging out with friends on the playground)

(getting ready to blow out her candle)

Thank you everyone for helping us celebrate Hope's 9th birthday! The party was a ton of fun and I know Hope really appreciated it. We celebrated at a local park and had a bbq. Since Hope's blood counts were a little low, it worked out great having the party at a huge open park, making it less likely for any sort of infection. The kids were able to run wild on the play structure and when they got tired they each got to decorate their own cupcakes. Thank you everyone who was able to come, and especially to those who helped by bringing food, moving tables and bbq's, decorating, making cupcakes, and more. I know Hope felt very special on her 9th birthday!

Hope T-Shirts

T-Shirts have been made in Hope's favorite color with a design that we feel reflects Hope's personality. The T-shirts along with the bracelets are a way to keep Hope in your thoughts and prayers and to help financially. The first batch of t-shirts have already been sold, but we are going to make a second order shortly. The T-shirts will be $20 each. If you would like to help support Hope and purchase one, please let me know how many you will be purchasing and the size you need. Please only let me know if you truly are getting one because we don't want to order more than we need. The shirts are American Apparel brand and are unisex sizes. Thanks!

1st Blood test looks good

(at the doctor's office to check her blood count)

(that same evening at her cousin Brooke's birthday party)

The first appointment to check Hope's blood count went well. So far she is doing great with the treatment. The only issue is that she seems to be having some trouble with her vision. They believe it will only be a temporary issue, but will continue to watch it.

So far doing pretty well

(painting from Hope's art teacher Mrs. Holterman)

So far Hope has been doing pretty well. She has been home for 4 days since her first cycle of chemo. There have been a few moments where she felt a little sick, but taking her medicine helps right away. Her hair is starting to thin out a little bit, especially around her scar, but it doesn't seem to be getting her down.  She truly is a strong young lady. It is so amazing how she is keeping her spirits up and how great she is doing. Hope has been an inspiration to us all.  We feel so blessed to have all of your support.

First Day of Chemo

(Painting by Hope during first chemo treatment)

The day started at 9am in the oncology office at the hospital. Hope was not scared, but she was very eager to get things moving. Her arm was extremely sore from getting the PICC Line inserted the day before, she was very tired, and her legs were sore as well. It was difficult to see her in a lot of pain while we were waiting in the room. At the oncology office they had to run blood tests to make sure everything was ok to start treatment. We waited about 2 hrs. in the oncology office for her to be admitted to the ICU. It is rare to have chemo treatment in the pediatrics ICU, so communication between the two teams was not optimal. Once in the ICU they gave her the largest room which was also the only room with a restroom in it. The reason for Hope to have treatment in the ICU is because, with the tumor, she developed Diabetes Insipidus, and it is very important to closely monitor the sodium levels in her urine. In the first 30 minutes there was a whirlwind of people coming in, ICU Nurse, Charge Nurse, Case Manager, Social Worker, Chemo Nurses, Dr's, etc. While all the people were in and out, Hope kept herself distracted by watching a movie. The next step was hydration time, it was a 2 hour process to pump her PICC line full of fluids. The nice thing about the PICC line is she doesn't have to get poked anymore in order to insert an IV. I wasn't there when they actually started the chemo, but it went really well. Hope painted during the whole treatment and didn't even notice that anything was happening. Afterwards, at one point, she thought she was going to throw up, but it was a false alarm. At this point in day two she is still doing well. They suspect she will be in the ICU for 4-5 days. I will keep you posted on how she is feeling. Thank you!

Bracelets for Hope

Many of you have asked how you can help, right now the two main needs are 1) to keep Hope and the family in your thoughts and prayers and 2) help covering the cost of living and medical bills as they build over the next several months. To help in keeping Hope in your thoughts and prayers we have had bracelets made in her favorite colors to remind you of her every time you see them. The bracelets are a $2 donation, if you would like one please let me or one of my family members know and we will get you one. If you would like to help financially, donations can be made at your local Wells Fargo Bank. Just say you would like to donate to the "Hope Sophia Trust". Thank you again, we are so grateful for all of the love and support you have all poured out to us!

PICC Line

Today Hope had the PICC line inserted. To get it in they did have to sedate her. It took two tries to get it in properly, but they got it done. She is doing well, but ready to hurry up and get everything over with. The PICC is causing a little tenderness, but should ease up soon. Tomorrow is the first day of her chemo, so we would really appreciate your prayers as Hope starts the next phase of her journey. Thank you!

Every girl needs a little pampering

We all thought it would be fun for Hope to get a little pampering before starting her treatment next week.  Pampering began with a great new haircut and some feathers courtesy of Missy, and then we finished with a delightful spa pedicure. Hope, your toes look great!

Waiting for the CAT Scan

Today was the full body CAT Scan. Here is a picture of my mom and Hope at the "Healing Gardens" at the hospital. Hope had to drink that yummy juice 2 hours before they could do the CAT Scan. They spent pretty much the whole day at the hospital waiting. They did have to sedate her to do the CAT Scan, but my mom said she woke up feeling pretty good this time. No headache or sickness. As soon as we hear the results I will post them, however it may be a few days to get them back.

Full Body MRI results

The results of the full body MRI and 2nd brain MRI came back good. Based on those it looks like nothing has spread, it is still just in the pituitary area. The Oncologist would still like to do a full body CAT Scan to be certain. This full body CAT Scan will be on Wed 7-27.

WHAT!!? NO TACOS?

So if you know our family at all, you know that no matter what the occasion...Birthday's, Christmas, Thanksgiving, Easter, Family Dinner...if you are are having dinner with us, you are getting tacos, it is just what we do. Well I have breaking news... we had a family get together last Sat. and there were NO TACOS. I don't even know how it happened, but it did.

We had a little get together at my Aunt's so everyone had a chance to spend some time with Hope before she starts feeling sick. In addition to spending time with Hope we had 2 very large cakes to celebrate all the July and August Birthdays in our family while we were all together.

The time was nice. Hope was able to join in on a light game of volleyball, and then we spent some sister time chilling in the hammock.

Biopsy Results

On Thursday 7-21 my mom met with the doctors at the hospital to discuss what they had found with the biopsy. To be honest the news was not quite what we were expecting to hear. The tumor was malignant with a very rare disease. I am not sure about specifics quite yet, but it is an HCG-Secreting Germinoma. In addition to that there were also abnormally high levels of HCG in her spinal fluid. With this  disease being so rare there really isn't much information on it and there are hardly any statistics. One thing that they do know is that it is a fast multiplier and so they want to take a really aggressive approach in treatment. Hope will start Chemo on Aug 2nd, she will spend 5 days at the hospital and 2 weeks off over the course of about 6 months. It will probably be the highest dose of Chemo. After Chemo they will do radiation and then another surgery. Hope is aware of everything that is going on and she understands that she will be losing her hair and will be very sick. Hope will also not be able to go to school in the fall, and it will be difficult for my mom to work because she will need to be there to care for Hope. They will be doing another MRI, this time on the full body to cover all the bases. I will post the results of that MRI shortly.

The Beginning of Hope's Fight

(Hope 11 days after surgery)

Hi All!
 Thank you for taking the time to check out Hope's Blog.


As many of you know on Friday 7-8-2011 Hope was rushed to Legacy Emanuel Children's Hospital in Portland by ambulance from the Legacy Emanuel Hospital in Salmon Creek where the ER had discovered a large mass on Hope's brain. Hope had been feeling kind of sick for about a month leading up to this, throwing up, headaches, losing weight and had even made a few visits already to the Urgent Care. At one point they thought she just had the flu and was dehydrated. About a week before the ambulance ride Hope was playing in the neighborhood pool when a couple of middle school boys jumped in and landed on the back of her neck. So my mom took her to the Urgent Care again where they thought she maybe had a minor concussion. As the week went by she just wasn't recovering from what was thought to be a concussion, she wanted to sleep all day, she threw up once a day and had a serious headache. On Friday morning Hope once again woke up with a painful headache and was throwing up, so my mom again took her back to the Urgent Care. It was there that Hope began screaming in pain because her head hurt so bad, the Urgent Care told my mom to take her to the Emergency Room. My mom took her to the Salmon Creek Legacy Hospital ER and Hope herself actually begged for a CAT Scan. After the results of the CAT Scan they felt it was urgent to rush her to the Children's Hospital in Portland where Dr. Monica Wehby performed an emergency surgery to put a tube in Hope's head to drain the spinal fluid to reduce the swelling around Hope's brain. Waiting at the hospital was one of the hardest parts, not knowing what was going on, not even really knowing exactly what they had found. After the surgery Hope was so sweet, saying to everyone "Thank you so much everyone for supporting me" I think she just felt a lot better, she was so grateful.
After that surgery we were faced with the results of the MRI. The MRI revealed there was a tumor the size of an egg behind her pituitary gland on her brain. The surgeon knew just by where it was, that it was malignant and surgery to remove it was needed right away. On the following Tuesday major brain surgery went underway. We were told that the surgery was going to be really complicated, the tumor hard to get to, and was going to take all day. With 100's of people praying, the surgery went really well and only took 3 hours. Her recovery was remarkable. She was talking and moving and breathing on her own practically right away. She did spend a couple weeks total in the ICU, but it was only a short while after surgery she was discharged and free to go home.
Dr. Wehby was amazing, she even did the surgery in a way that they didn't have to shave Hope's hair. At this point we were under the impression that she got most of it and there was only a small possibility of radiation. We were simply waiting on the results of the biopsy of the tumor and Hope was home, trying to get back to enjoying her summer.