THURSDAY, JUNE 12, 2008 02:47 PM, CDT
We are home! We will be at the torch run! It starts at 10:00 am for those interested. Still excited about our Make-A-Wish trip. Tired but happy. We go back in Tuesday for our 5 night chemo stay. Pray Diego stays strong and healthy through these last 3 rounds of chemo.

MONDAY, JUNE 16, 2008 08:51 PM, CDT

Thank you to everyone who supported us in this years torch run. The torch run was great. Diego was a bit overwhelmed as more people noticed him this year. His picture from last year is quite popular and was on the poster for the event and in many slide shows and in the Grunion Gazette last Friday. He had fun hanging out with everyone. On Sunday we had Father's day dinner here. My sister is here from New York and Frank's Mom from Chile. It was nice. Sorry I did not update sooner but we had a lot to do for the torch run and Father's Day. Not to mention just getting over the 8 day hospital stay. We have been home 4 days but go back in tomorrow! I will try to put up a slide show soon. I still need to unpack from last week and pack for this week!

FRIDAY, JUNE 20, 2008 08:53 PM, CDT

Sorry I did not update earlier. Diego is doing well. Misses home but doing good. Looks like the Torch Run slide show may take a few more days. Too hard to work on it here. Diego still has a little bit of congestion in his chest so we will go home with albuterol. Pray he stays healthy through these last rounds of chemo and continued healing. On a really exciting note that little bump we were worried about has disappeared! Maybe the antibiotics? Very exciting.




MONDAY, JUNE 23, 2008 08:32 PM, HST

We arrived home yesterday at 10:30 am! We had a nice day. Unfortunately Lilia spiked a 102 fever today after vomiting. She was laying on the ground covering herself up with her blankie saying I don't want to be a princess anymore and I don't understand. Funny but scary. After that no more vomiting and she ate fine but still feverish when the fever reducer wears off. I am taking her into the pediatrician tomorrow and praying Diego does not catch whatever it is. I don't think we can stand any more time at the hospital. It has been a challenging couple of weeks and now I'm worried about Lilia and hoping it is an ear infection as that would not be contagious. I did enjoy cuddling with her extra today as she usually is not as cuddly. We really want to attend the Long Beach Pirate invasion this weekend at the pier mate. Being in the hospital with all of the adorable children and families who are also struggling through made me even more grateful for the support for the torch run. The service they provide to families in all stages of this horror is really a bright light. They took a group of teens to Disneyland last week. I know it was such a lift for our buddy Jeffrey when he attended last year. I also wanted to share the youtube videos for those of you not reading Julian's carepage. Diego is in the 2nd video. Please do not turn a blind eye to the reality of childhood cancer. As disturbing as it is to you it is 100 times worse to be in the battle. People need to be aware and support funds specific for childhood cancer as much of the funding goes elsewhere. The videos are called Cancer's Hell:
ANGELS
STILL FIGHTING (BOYS)
STILL FIGHTING GIRLS & BOYS
STILL FIGHTING & ANGELS

TUESDAY, JUNE 24, 2008 01:27 PM, CDT

Lilia is fever free but may have hand, foot and mouth! There are two sores on the back of her throat but no where else. She will no longer be contagious tomorrow night. Not sure where she picked it up other than the hospital. Really hoping Diego does not get this. He had it about a year ago.




TUESDAY, JUNE 24, 2008 11:19 PM, CDT

Well no fevers but Diego had some green mucus. Sorry to gross you out. I called the oncologist and he called in an antibiotic. So Diego took 7 different meds today! Bactrim he takes every M-W as an anti pneumonia and diflucan everyday to quell fungus, plus his wonderful GCSF shot which is very painful to bring white blood counts up, solutab for heartburn caused by one of the chemos, acyclovar to prevent a mirage of mouth sores caused by herpes symplex 1, augmentin for green stuff and cold and cough medicine. Nurse Mommy can say his chest sounds clear and energy level is up. Eating very well too. Weighed 16.3 kg in the hospital if you can do the math! Our goal is to get to the Pirate Invasion Mates! Pray for health. Slide show of the torch run is coming. Hoping to get actual picture of him running from the photographer.

MONDAY, JUNE 30, 2008 12:58 PM, CDT

Sorry for the delay in updates but I have been busy here. It seems to never end. Lilia vomited everyday once or twice a day until Friday. Diego has clear mucus now but his cough sounds pretty bad. He will see the Dr on Wednesday and gets blood work today. Hoping it will go away soon. It is not inerupting his sleep so that is good. I am really behind on emails but should catch up soon. Busy working on projects around here. We made it to the Pirate invasion but at 1:30 they still had not invaded the pier! Diego was very disappointed as were many other kids. He quickly got over it though when he got to go play in the sand. Frank is going to try and get the torch run pics from the photographer today at the hospital so I can make the slideshow.

SUNDAY, JULY 06, 2008 09:57 PM, PDT

Hope everyone had a great 4th of July weekend. The kids actually saw fireworks for the first time! We did try to see them at Disney but they cancelled the show due to wind. They both were just amazed! It was so cool to watch them. The rest of the week was nice as well. Frank's Mom is still in town from Chile. We played tennis at the park. The kids love watching Wimbledon too. Diego is getting better all the time. We then played at the park. Daddy and Diego saw Kung Fu Panda on Thursday and loved it and went to lunch at Island's just the boys! We met Diego's buddy from school at the park on Thursday afternoon and at the fireworks show at the park on Friday night. Diego's teacher also made Diego the most precious picture book ever. My parents want to buy a copy and are taking it to Bible Study to share. Also my niece Michelle stayed with us this weekend. The kids love her. We went to the park again today and are gearing up for our 5th of 6 chemos tomorrow. Hopefully we will have a few visitors while there and Diego's spirits will be high. Diego will also get another chest x-ray to check on his pneumonia. I hope we will finally get the torch pictures. They do not have them at the cancer center yet but the photographer works in Miller's West so we will visit him this week. Oh and FINALLY....parts from Germany arrived and Diego's robot arm is ready! We will try it on Monday the 14th! I hope he likes it. He is doing so well without it. We also then should start physical therapy to help him use it.

WEDNESDAY, JULY 09, 2008 04:38 PM, HST

Diego has been doing well so far. He has had fun playing games in the playroom and watching movies. There was a dwarf horse, the smallest in the world named Thumbelina that visited yesterday and today was Pandie-monium over the resident therapy dog. Diego's buddy from school also came with french fries! Yummy! 2 nights down- 3 to go.

THURSDAY, JULY 10, 2008 10:16 PM, CDT
Diego still has a partial lung collapse. The pulmonary Dr wants to do another bronchoscope. I asked him to hold off until we come back in three weeks. Diego will be on breathing treatments at home. Please pray it clears up and we do not have to do another procedure. Diego is still doing great and Lilia loves being at the hospital with us. Today she chose a ballerina princess costume to wear and take home and had a ball with glue. She needed a bath after that! Diego loves playing board games and this mini air hockey game they have. There are so many new kids here lately and it is sad seeing little girls hair fall out and hearing the scared screams. Please pray for all the kids.

FRIDAY, JULY 11, 2008 12:45 PM, PDT

So I must admit I have been a little worried and depressed. I keep telling myself in my heart I know he will be fine but it is hard not to worry. God has told me Diego will be fine but Satan is still trying to hit us with doubt. I talked to the pulmonary Dr and the oncologist. They both reassured me that it will be resolved and it is not urgent. I was thinking of how much better I feel and a hummingbird came right up to the window! God is good and we will be home tomorrow!

MONDAY, JULY 14, 2008 09:38 PM, CDT

Diego did not get his robot arm today. His arm has grown so it will need to be adjusted. Diego asked if the arm could be camouflage instead of skin color! The Dr said yes. He was very comfortable with it and now is excited to have it. We will be seeing Diego's surgeon tomorrow as this past month his bone seems to be growing quickly which may require a minor surgery. I hope not but it was something we were told could happen. Also Diego has not been very well tummy wise. He got sick before we left the hospital, twice yesterday and once today.

TUESDAY, JULY 15, 2008 07:04 PM, CDT

Diego seems to be on the mend. Long Day today with the x-ray and seeing Dr. Femino. He will need a minor 1 hr surgery to remove part of his bone. He has stump overgrowth. This will happen on August 27th and may or may not be outpatient. We are planning for an overnight at least. Diego will not get his robot arm until after that date! He will most likely need to be recasted and then just the top part will be redone. We hopefully will get our last drop of chemo ever in 16 days! Unbelievable. Seems like just yesterday we were at City of Hope removing his arm.




FRIDAY, JULY 18, 2008 09:32 AM, CDT

This has been a rough week. Diego was sick so I put him back on zofran around the clock. Last night his mouth sore woke him every hour in pain. Then he slept from 5-8 a.m. Poor guy. I really hope this sore goes away quick. His white blood cells should be on their way up. We did go for a walk yesterday morning and Diego wanted lemonade in our fancy plastic glasses(wine glasses) with a wedge of lemon on the rim. I added little umbrellas I had bought for him about a year ago. It was cute. Trying to keep my eyes on August and the end of this part of our journey.




SUNDAY, JULY 20, 2008 10:10 PM, PDT

Diego's mouth sores are not waking him up but are making eating uncomfortable. he threw up again this morning. His platelets are also obviously low and with him taking naps again I think his red blood cells may also be low. Hopefully on the way up. We go in for blood work and to see Dr. Calderwood on Wednesday and plan to check in on Sunday for our last chemo. Frank and I celebrated our 10 year wedding anniversary last night. It was really nice to get out. We are very blessed to have each other. He really is my best friend and so much more. Today Frank, Diego and my niece Michelle saw Wall-E. Lilia and I enjoyed frozen yogurt and a walked around a small local shopping area that has fountains and bridges over the man made pond. It was nice to spend time together. Especially on the grass as it took Lilia about 40 minutes to eat her yogurt in my lap while basking in the sun with the cool ocean breeze talking about whatever came to her mind. Tomorrow we plan to go to the park. I hope his belly issues clear up soon.




MONDAY, JULY 21, 2008 02:58 PM, PDT
Forget to tell you about our dinner after the movie! We went to The Crab Pot on the marina where we ALL had calamari, shrimp, fish and crab! Oh and the dessert is this yummy yellow cake filled with rhubarb and strawberries baked fresh and served hot with French vanilla ice cream! It was so yummy. We watched the sunset seaside from our table and then walked along the marina until it was dark. It was a much deserved wonderful day! Diego begged us for a seafood dinner. Today we headed to the park and tomorrow we are going to see the Pirates Who Don't do Anything (a veggie tales movie) at the free family film festival! Also the photographer at the torch run said he again got a great shot of Diego. Hopefully next week we can get a copy and I will post it along with others in a slide show. One more thing. Diego's prayer quilt of love is on it's way and I am so excited! I will post a pictures as soon as we get it! Can't wait to see the look on Diego's eyes. Diego still is not 100% but his energy level is much better.

TUESDAY, JULY 22, 2008 10:07 PM, HST

Diego's prayer quilt is here! Here is what was on the enclosed note: Patchwork Prayers is a simple idea with powerful results. The warmth of the quilts comes from prayers tied into each knot on the quilt. As Bridget made Diego's quilt for him, she tied each knot and said a prayer. When Diego has visitors, they can tie a knot and say a prayer, he will be wrapped in love and prayers. We hope Diego's quilt will bring him love, hope, warmth and comfort. Diego opened it and loved it! It is covered with bright colors and dinosaurs! Great quilting too. Tonight we talked about Diego's last chemo and praying that his cancer would never return. He said yes but we need my quilt and we need to tie a knot. Thank you Bridget and Marta and everyone at Patchwork Prayers.
We had another great day today watching the Veggie Tales movie and going out to lunch thanks to Grandma and just being kids playing throughout the house. Tomorrow we are off to the park and then to clinic.
PS
I took a photo of Diego praying with his blanket but the setting I used made the photo too big for the site so I will attempt again tomorrow.

THURSDAY, JULY 24, 2008 10:08 AM, CDT

Diego's counts are great but he did lose 2 lbs. The Dr did a couple of blood tests to make sure he is not malnourished. With the green and red powders and supplements he gets I don't think he is but I'm glad we are checking. He also prescribed an appetite stimulant to see if that helps. We also have to bring in a poop sample as he has had on and off loose stools. As soon as he goes today we have to drop it off. Diego said yuck! I hope they use gloves! So if all is well we will go in on Sunday for chemo and get our chest x-ray and maybe a couple of our other end of treatment scans.

We are tying our knots every night. Diego loves sleeping under his quilt!




SUNDAY, JULY 27, 2008 10:03 AM, CDT

Diego is eating a lot now and even though we are broke we took him to two restaurants as he had big cravings! We had a great week at the park at home. It is amazing the difference a week makes. We are supposed to be in the hospital today but there was a mix up so we will go in tomorrow instead. So today we will again go to Liberty Park enjoy there awesome playground, cool sprinkler water park and have a picnic lunch. Tomorrow we will be off to the hospital.

"Diego asked if the arm could be camouflage instead of skin color!"




Thats awesome! When I was a kid I broke the hell out of my left arm and they gave me the option of several different colors for the cast, including camouflage. I got camo for the full arm cast and when they switched to the one that just covered the forarm, I changed to glow in the dark. Having those cool ass casts made me almost happy I broke my arm (that lasted untill I found out I couldnt get in the pool). I hope Diego is just as excited about his new arm.

TUESDAY, JULY 29, 2008 10:28 PM, HST

Rocking and a rolling here at the hospital! Hope you all enjoyed the earthquake. Lilia and Diego were watching a movie and did not even realize there was an earthquake! The earthquake just added to an already anxious week. We come in on Monday and Diego has a 101 fever! His blood work reveals he needs a transfusion. He has been fine since. Our oncologist informs us his last day is Friday! Our CT reveals no change in his lungs and pulmonary wants to go back in! We are not going to do that and the oncologist agrees. Then we have an earthquake- pretty nice size one that seems to roll forever. Tomorrow we have a bone scan hope that comes back good so I can exhale. It is a really stressful time coming to the end of treatment but losing our wonderful oncologist is really hard. I remember the first day I met Dr. Calderwood. He asked me how Diego was doing and then he asked me how I was doing. None of the other doctors asked me that and I cryed a bit and said well I had not thought about that until you asked. He said just know this is the hardest thing you will ever go through. He never sugar coated anything but made me feel comfortable with the truth, even when he told me Diego would most likely loose his arm I could deal with it. He just always knew what was going on with Diego without looking at any notes. He always was so compassionate and would always answer my questions with such knowledge. He has to move on but we will never forget all he has done for us.

THURSDAY, JULY 31, 2008 11:42 AM, CDT
Yesterday we did not have the bone scan. We will have it today at 2. We did get some concering news though. There is an area in his bone near his shoulder where he has something going on. The oncologist says it looks like a cyst rather than a tumor but we cannot rule that out without a biopsy. We are having a hard time right now, especially me. I'm hoping we will see Dr. Femino the surgeon in Tuesday but we most likely will not be able to biopsy it until the following week when his counts come up. Hopefully we will have his other surgery done that day as well. I'm thinking I may need to start an anti-anxiety med finally. I had a rough night. Please pray for our family. Some good news. Diego's weight has went back up to 16.1 kg! That is about 35 and a half pounds. He looks great and is doing well.

THURSDAY, JULY 31, 2008 04:10 PM, CDT

Well some hopeful news. It did not light up on the bone scan. The radiologist who used to be an oncologist compared it to the last one and said there is no change. Prayers are working! Thanks for all your kind words. I'll post more tomorrow.




FRIDAY, AUGUST 01, 2008 05:03 PM, CDT

The bone scan came back completely clean which actually is a first for us! It is pretty sensitive so random things pop up on it. Also we found out the CT reports the spot on the shoulder is only 8mm. So that is much more promising. We will meet with Dr. Femino on Thursday morning and see if he want to biopsy it or watch it. The oncologist was very optimistic. It was still very hard to say goodbye.




SUNDAY, AUGUST 03, 2008 09:46 PM, CDT

Child Life had a great last chemo party for Diego complete with an awesome pirate sign, ipod, microscope (his favorite), and many other awesome gifts. He really loved it all and cannot wait to go back but just as a visit. The thought and love they put into it is amazing. We have had a wonderful 2 days home. Diego wanted another crab feast so I went to a wonderful market that carries Chinese food in the Artesia. I bought live Dungeness Crabs at $6.99 a lb and live clams at $2.99 a lb. We also had Trader Joes's Calamari and fresh baked sourdough loaf with whole grain rice pilaf and my cesar salad. My niece was here too and we all loved it! Tonight we had more of the rice, bread, salad and yellowtail that I bought on sale at the market for $2.99 a lb! Diego is eating very well and feeling great! He has had a great time playing and talking up a storm. He is so adorable and loves having dinner conversation. He explained that Lilia has been crying more and not listening because she really loves him and it is hard for her when he is at the hospital. We said but it is not your fault and he said oh no it is cancer's fault. Another conversation was about how he should talk to Lilia about potty training and school and how he has a pooping book that he would like to share with her! How old is my son? I could go on. He makes us smile on the inside too. Frank and I are doing really well but are feeling overwhelmed about our oncologist leaving but know in the end we will make the right decisions. We really feel in our hearts that Diego has been healed.
"Don't be afraid, I am with you. Do not be dismayed, for I am your God. I will strengthen you. I will help. I will uphold with my victorious right hand." Isaiah 41:10
(thanks Heather)

THURSDAY, AUGUST 07, 2008 03:49 PM, CDT

We had our appointment today with both the surgeon and the sarcoma specialist at City of Hope. Dr. Femino agrees that it looks like a bone cyst but said that since he is already doing surgery on August 20th he would do a core needle biopsy at that time. The surgery will be in 20 days. So we are staying positive and plan to have tons of fun these next 20 days! We also had another scare this week. For 24hrs we thought my Dad had melanoma! The dermatologist from Kaiser read the result on the computer but the pathologist called the next day and it is actually just a-typical cells! PHEW! That is pre-cancer and he will have more tissue removed but thank God it is not melanoma!





FRIDAY, AUGUST 08, 2008 02:37 PM, CDT
OOPS!

Actually surgery is the 27th. Also left out that they will be taking a piece of his bone after cutting it and fusing it to the end. He will have metal pins in it for 3-4 weeks. This will hopefully prevent a future overgrowth and surgery.

I had a barbie arm for a while. It was a dark period in my life.

Every time I see this thread hop to the top, I get excited to read about any updates. It's hope; it's inspiration; and my well-wishes are for Diego and his family.

SUNDAY, AUGUST 17, 2008 08:48 PM, HST
Hi everyone! Sorry I have not updated lately. We have been having fun doing normal kid stuff. We have been going to the park, playing in the pools, eating frozen yogurt, going to free family movies days and having play dates. We also went to the Cerritos Library which is beautiful and has a great kids library with a real 40 ft T-Rex skeleton and huge tropical fish tank! Lilia will be 3 tomorrow. I can hardly believe it. We have a full week and two days until Diego's surgery and although it weighs on our minds we are doing well. We have 2 full days of pre-op stuff at City of Hope on Thursday and next Tuesday. Thank for your continued support and prayers.



MONDAY, AUGUST 18, 2008 10:34 PM, CDT
FINALLY! The Torch Run Slideshow! http:////www.rockyou.com/show_my_gallery.php?source=ppsl&instanceid=120624918



SUNDAY, AUGUST 24, 2008 06:59 PM, PDT
We are only a few days away from Diego's surgery and biopsy. I would be lying if I said we are not worried. It is very scary to think that we could get such horrible news. Please keep us in your thoughts and prayers. Right now it feels like we are on a roller coaster that has stopped with us at the top of the hill suspended.

MONDAY, AUGUST 25, 2008 06:19 PM, PDT
We are doing much better today. The power of prayer and the Bible! So keep up the prayers and the messages. They have really helped us as well. Sometimes it takes times like these to really feel the power of God. I know I do not have an off and on switch and it and I feel him here.



TUESDAY, AUGUST 26, 2008 08:16 PM, CDT
We had a rough day today. Very exhausting. Not sure when I will have computer access tomorrow to write an update but I will as soon as I can. We need to be there at 6:30 am to do the CT that should of been done today thanks to our insurance company. Thanks again everyone our surgery should be about 10 am. God is good.