SATURDAY, MARCH 08, 2008 09:16 AM, CST
So our fight against cancer began just weeks before Diego's 3rd birthday. We spent 10 days in the hospital and for the first time I saw Diego shut down. I started to worry and realized that we could not do this alone. We needed to work on our relationship with God. Diego of course came home from the hospital and bounced back to his spunky self. We bought him a Doctor's outfit so we could do play therapy. That is when I realized how I has a Mother was able to get though all we had been through. Diego was always a fighter. Whether it was at therapy while they were stretching his hand or if he wanted to do something and we said no. It was exhausting at times. This spirit carries over to learning and love for his family and friends as well. When Lilia was a baby and started sitting I would take her out of her sling and sit her on a blanket to play while we at the park. If any child got close to her he would get right in front and say, "That is my sister!" I would tell him it was OK and he would say no it is not! As she got older if she started playing with other kids he was always by her side making sure the kids were nice. He would watch her with an eagle eye across the park. He never backed down.

I share all this as we have many new readers. Of course you can go back and read the journey of the last year and a half. Diego has always been the kid to make friends in a minute with kids and adults. I know that him losing his arm may not be easy but I do know he will adapt and exceed our expectations as he always does. He is a lot like his Mother. Although his life has different challenges than mine he has the same spirit. That is how I know.

So tomorrow is a big day. We meet with our oncologist in the morning while Diego is at school and talk about our next course of action. We then have to be at City of Hope at 2 for pre-op blood work and exam. We are all having a bit of a ruff time right now. Not sure if I will update before surgery on Wednesday but will try to update after surgery.
As I'm sitting here typing this I noticed the hummingbird outside the window. It always seen to come around when I need extra strength but I was so in a daze all I thought was that it was strange that it was actually coming right up to the window screen. Then I was here looking at our friends blog and the hummingbird came back and did the same thing. As soon as I realized that this again was my little messenger saying things would be OK he dashed away! Thank you God! I needed that!

Just wanted to let you all know that Diego is out of Surgery and is ok. He is in the NICU.

Karen

The surgery went well and he will be held in ICU over night for observation. Diego is awake and hasn't been in any pain. When they have a chance and internet access I'm sure they will update.

Sorry it took me long to update. We now have internet here as we moved out of ICU! Diego did have some pain last night but not to bad. Today he is doing great. His first reply when he was half awake from anesthesia was I have a little arm, now I can't pray! I told him all he needed to pray was to simply talk to God in his own mind and that there is no correct way to pray. He does not want to move much yet but his spirits are up. I will try to update more later. Keep up the prayers. I know they have lifted us as I was not afraid even when they (s)aid we would spend the night in ICU because he received 10X's the normal dose of morphine to control his pain during surgery. I knew he would be fine and he was. Woke up better than ever. Well Diego calls. Update when I can.

Love,

Michelle

In my dreams last night Diego still had his arm. It was in much pain. I wonder how long it will take for me to dream of him without it. Our oncologist said many of his teenage patients take 7 years to dream of themselves without it. I do not miss his arm. It has been a source of great pain but I do worry of course about how it will affect his self image but am quite assured that he will be just fine. He always makes new friends of all ages wherever we go. As a mother though you know that it does not change one bit how you love and perceive your child. Just knowing that this surgery will most likely save his life puts it into perspective. Today he said Mom this is my good arm and this is my bad arm. I said it is not bad and soon it will be your super arm when you have your robot arm. He had a big smile on his face.

I am not going to pretend that being here is easy but I cannot say we are devastated. We still have our baby. It is not going to be fun but you have to keep your eyes on the prize. When we talked to child life before Diego had surgery they gave him a bear with its arm amputated at about the same place and wrapped in an ace bandage like his is today. He brought it with us along with his puppet T-Rex and books and some dinosaur figures. Well today a social worker gave Diego two dinosaurs. One was a maybe a little bigger than a beany baby sized T-Rex that looks very much like his puppet T-Rex. He really liked it but then said I will give this to Lilia. Then he said she can have the bear too! So sweet a he really treasured the bear and really liked the T-Rex. She was so happy and I think it is now going to help her deal with her brother's arm. All the nurses can't stop saying how cute Diego is. I have a whole gratitude piece to write but will save that for tomorrow or the next day depending. Thank you all for signing the guestbook and keeping us in your thoughts and prayers.
Love,
Michelle

FRIDAY, MARCH 14, 2008 04:47 PM, CDT
Looks like we will be going home tomorrow! Dr. Femino said Diego is doing better than any kid he has seen and healed amazingly. He said he needed to get out of bed today. We did and he has not been back in bed since! We played video games, scaled the library bookshelf- yes I'm not kidding and had a great time painting, playing with toys, and playing soccer in the playroom. He told me he likes his little arm. Amazed is just not enough to describe how I feel. I think I am just in awe of him. He has yet to get frustrated. I think I will make a slideshow if I have time tonight and post the link. Keep praying. I hope to take Diego to school next week.

What keeps me going besides faith? The kindness and generosity of so many people. Knowing so many people genuinely care about us. Some people who are our closet friends and family and others we have never met. All the prayers and encouragement. I feel like we have so many families out there surrounding us. Diego's school said when Diego has a low immune system he can go after school and they will sanitize a room for him and we can enjoy the playground! People sending card with kind words, leaving messages here and to my personal e-mail, hearing about all the churches and groups praying for us and people cooking us meals. Just last week two people who have never met us gave us incredible gifts and made us both cry. The first was a friend of Diego's teacher who wanted to makes sure we knew about Make-A-Wish foundation. I explained we did and were waiting to find out if we were approved for Give Kids the World our first choice or Disneyland our second choice as Diego had never been. Well this friend offered to send us to Disneyland. I wanted so badly to say no but all I could do was cry as I was so touched that someone who had never met us would want to do that for us. She did not know that we had planned to go to Disneyland after we caught up on bills from our previous years battle with cancer but now I knew we were headed for more of the same so we would just wait until after treatment for our Make-A-Wish as Diego will be in the hospital our have a low immune system for most of the next 6 months. Diego had been talking about going to Disneyland and I felt bad having to postpone but Disneyland is very expensive and we really are in no position to go. So now we are going to Disneyland and Mom does not ever have to regret not going or ponder it during treatment. I am just so touched that someone who has never met us would care so much as to do that. Later in the week we received $250 dollars from a woman that only knows me via the internet through a site I joined when I was pregnant with Lilia. Also Frank has had two guys at work donate a week each of there vacation time. I told Frank we could not take that much but they both had extra time banked from the previous year. Made me feel better but what person would not like to spend an extra week away from work? VERY generous. I don't think gratitude is a big enough here as it is so much more profound and moving to have people supporting us in so many ways.

I'll leave you with this: http://www.rockyou.com/...instanceid=105956746

We are home! Left the hospital at 12:30, ate lunch, played a little and we napped with Diego. Still not unpacked but that will happen. My Mom is making a St. Patrick days feast. Lilia and Diego helped make the Irish bread and decorate the table. They loved it. Very tired parents. Please pray Diego does not have pain tonight. It seems to come on at night. I will be waking every 4 hrs to give him pain meds.

Diego had no pain at all last night!!! He seems to be adjusting well to his amputation. He did have a melt down when we put his long sleeved jacket on yesterday. He wanted part of his arm to stick out but was nervous about us fixing it. Today though he was fine when we put it on for a walk. I'm glad it is warm enough for short sleeves as that is what he is comfortable in. he constantly reminds me he only has one hand. PaPa had his mandolin on Saturday and the were singing songs. I went to get him a maraca and he said just one Mommy I only have one hand. I said I know baby. He also ask for help when needed with confidence which is nice. He also told me today he only has 5 fingers and when Frank and his were playing and Diego was the villain Frank asked his which villain he was and he said the one armed bandit. He actually makes jokes about it! We have had to help him with so many things already because of the limited function he had that it has not changed our life much. We went to the aquarium today and it was really nice. We also found out from Make-A-Wish that we are going to DisneyWorld and staying at Give Kids the World. The lady said Mickey would write him a letter so he had something to look forward to after treatment. I cried after getting off the phone. I can't wait to take them and completely spoil them for a week. Here is the link: http://www.gktw.org/

We go see Dr. Femino tomorrow and will have our first chemo in about 2 weeks. Once we figure out the exact plan. Diego is going to school tomorrow.

I feel like I am running around 100 mph but can't seem to get it all done! My brain is not working so well. I have been trying to get our house in tip top order as I know that will go to the wayside the next 6 months and of course focus all my energy on the kids. Leaves little time though for the mind to wander. I am also reading a new book given to both of us by my dear friend called The Purpose Driven Life by Rick Warren. I talked to our oncologist on Tuesday and we will start chemo on Friday April 4th. We could start a week earlier but we want to go to Disneyland after Spring Break and I feel Diego really needs that one week of school before we start chemo again. We will have a five night stay. We saw Dr. Femino today and the pathology confirmed clear margins and that it is all embryonal rhabdomyosarcoma. Thank God. That is good news. Diego was really nervous about seeing him today and is scared about his prosthetic now. He will not be fitted for about a month and then we have to wait for it to be made. Not sure how long that will take but we will know more when we see the prosthesis doctor in 2 weeks. We are working on really explaining this to him better and the Dr. will show him too. Oh and the pre-school director told us that Nick Vujicic will be speaking at her church. He was was born without limbs. Check out his story here: http://www.lifewithoutlimbs.org . What timing! As Mrs. Henderson said- God timing. We are very excited to have this opportunity. Also we were unable to attend the St. Patrick's Day (patron Saint of Ireland) bash at my Grandma's house and they took up a collection along with cards for us. Thank you all so much! We are taking Diego to the Discovery Science Center tomorrow. Last but not least Diego is on the flyer/poster for this year's torch run. Check it out here: http://www.jjccc.com/ . You can find our page under Michelle Fuentes under Search for Fundraising Page on the left hand side. Click on 2008 Torch Run tab too. OK- I hope this all makes sense- I am tired.
Love you all,
Michelle
Faith is the reality of things being hoped for. The evidence of things not seen.
Hebrews 11:1

Wow! $500 dollars already raised for the torch run! Awesome! We have been very busy. On Friday we went to the Discovery Science Center in Santa Ana. They have a great Dinosaur exhibit and there was a fantastic bubble show. On Saturday Diego's cousin Javiera and her Mom (Frank's Aunt) Angie flew in. The live in Chile. They left here this morning for Florida. We had a wonderful visit and the kids loved every minute. On Easter we had dinner and our Easter Egg hunt with my parent's at our dear friend's house. It was so yummy and fun. I cannot believe in 9 short days we will check into the hospital. Yesterday we went to Mission San Juan Capistrano and it was beautiful. We ate lunch and checked out the train depot. We will have to go back there again it was very nice. Today we walked to a park and played tennis. Diego still is great, even with 1 arm and played at the park which included picking up trash, rolling down the hill and eating lunch. Diego cannot wait to go back to school next week and DISNEYLAND on Wednesday! We are all very excited to go to the happiest place on earth! So as you can see we have been living life to its fullest.

TUESDAY, APRIL 01, 2008 01:19 PM, CDT
Disneyland was incredible! At first Diego was a bit overwhelmed and we made the mistake of going on Snow White as our first ride. He left crying. Pinocchio was a bit better but still scary. Then we went on Mr. Toads Wild Ride and Peter Pan and he loved them. Especially Peter Pan. By 10:30 a.m. we had been on all of those plus, Dumbo, The Circus Train, Storybook Boat, and Alice and Wonderland! Next we headed to Pirate's of the Caribbean which was both of their favorites. I was sure Diego would be scared but not at all. Then we headed to the Jungle Cruise which they both loved. After lunch we headed to Toontown. That was great fun to just run around and play. We also saw Minnie, Pluto, and Goofy. Pluto hugged and patted Diego on the head but we could not get a good picture as everyone was swarming him. Lilia wanted to have no part of getting close to the but waved. We also found out that Diego does not like rollercoaster's but Lilia loves them. Also Lilia wanted to freeze more often than not so she could show off her Minnie Mouse shirt. We then headed to the Buzz Light Year ride which Daddy and Diego loved and then Nemo. After that it was parade time and the waiting for that was pretty painful as Lilia's lack of nap had her a bit delirious. As soon as it started though they we blown away. Next off to dinner, more Lilia breakdowns and I was certain we would have to leave soon. We had to tell to eat or no steamboat ride which we could see and hear from our table. Once we went on the Steamboat Lilia really calmed down and Diego absolutely loved it. Then we were off to Pirate's again and ended the night with the Disneyland Train. Mickey, Pluto and Goofy were on the next car! Mickey kissed us trough the glass! They were being really silly. The kids loved the train ride, especially the dinosaur exhibit which was really impressive. We walked out of the park at 10:30 p.m. Both kids asleep in the stroller. Diego woke up this morning, put on his Buzz Light Year hat from Disneyland and grabbed his Buzz laser shooter and said, "Hi Mommy can we go to Disneyland again?"

THURSDAY, APRIL 03, 2008 09:27 PM, CDT
Chemo tomorrow! We went for our pre-treatment labs and check up today. Diego did really well. He left and said that was easy. Thank God. I was about to cry as I swiped our yearly parking pass at the entrance. Please pray that Diego does well these next 6 day/5 nights.

We had Diego's sutures removed on Tuesday. We gave him Ativan before the appointment and he did really well! We then saw the prosthesis Dr. He will order a special sock called a shrinker that Diego will wear for 2-3 weeks and then he will be mold casted for his prosthesis. So it will be a couple of months. We see Dr. Femino and his eye Dr in 3 weeks. I will update from the hospital.

Psalm 34:4
I sought the LORD, and he answered me; he delivered me from all my fears.

FRIDAY, APRIL 04, 2008 09:14 PM, CDT
Diego has had a fantastic day! He was nervous when we arrived but shadow the dog was here playing her piano and performing other special tricks. Talk about timing! Next Diego painted a wind chime and played with some animals in his room. Then at 2 back in the playroom to make a heart shaped box. He covered it in sand with glue and then decorated it with shells. He has not got sick once and has been eating like a champ!

. . .

FRIDAY, APRIL 04, 2008 11:40 PM, CDT
Still doing great. Diego is sleeping. Here is our Disneyland slideshow:
http://www.rockyou.com/...instanceid=108567285

Pastor Bill asked Diego what his favorite place was and he said, "DISNEYLAND!"

. . .

SATURDAY, APRIL 05, 2008 08:50 PM, CDT
Day 2 is done. 3 to go. Tomorrow he will finish a 48 hour infusion of Doxyrubicin. He still is doing well physically but had a couple of I want to go home crying fits. His appetite was OK today but he also slept more.