WEDNESDAY, OCTOBER 15, 2008 03:14 PM, PDT

So sorry everyone. I thought I had someone else update but it looks like that did not happen. Diego did very well with surgery. They were able to remove all of the tumors. He has not needed any pain medication besides occasional tylenol since 9:30 pm last night. We are still in ICU only because there are no beds available. Will update more tomorrow. Thank you for all you thoughts and prayers. Sorry for the miscommunication.

He sure is. Good to hear they managed to get all the tumours, that's scary stuff.

They only got the tumors in his head... I believe he still has some in his lungs.

THURSDAY, OCTOBER 16, 2008 10:34 PM, CDT
We are home!! We are all exhausted. We start our new chemo regimen on Monday. We will be inpatient for two days and if he tolerates it well will do the rest outpatient. For now we are doing irinotecan and temodor along with stereostatic radiosurgery to his brain in three or so weeks. Diego had a chest CT which showed that the right lung has been cleared of tumors and many of the small ones of the left are gone with one stable remaining and the one they biopsied looking a little bigger. So mixed news. Diego is doing well. We are so excited to spend some time at home! It has been 2 weeks away including our trip. I plan to update about our trip tomorrow and make a slide show soon.




FRIDAY, OCTOBER 17, 2008 10:38 AM, CDT
Diego slept so peacefully last night! He did not wake once and woke up so happy this morning! He ate a great breakfast and we are off to the Aquarium! I went to the Library as they have 50% off coupons! I am so filled with happiness and joy right now. My house is a wreck and I could care less at the moment. We are off to have a wonderful day! I also received two free passes to Disneyland from the park! We can use them before December 18th! We cannot wait to go. I'll update later tonight. Feeling very blesses right now. Sorry for the overuse of these: !!!!!!!!!!!!!!!!!!! but God is GOOD!




FRIDAY, OCTOBER 17, 2008 10:55 PM, CDT
I have felt like I needed to share a few things. First of all I want to thank everyone who has sent us money. It is really helping us out tremendously. All of our prayer warriors. Also to three of my best girlfriends from high school who have just been here with me through this even if we grew apart it really just shows how strong our bond was back then. All of our new friends and extended family. I wanted everyone to know as I think of these though financial times that we are not in debt for any other reason than this illness. We bought our house in January of 2001 and took a loan that was $100,000 less than what we qualified for. We own both of our cars, no car payments and I was able to stay home with Diego because of these wise decisions. Our first family vacation besides camping was this Make-A-Wish Trip. I thought it was only fair to share this. We do buy Diego more toys than we would of if he was well but if you saw what he goes through and how a new dinosaur or transformer can help bring his spirits back up you would understand. I'm sure most of you could care less but I just felt obligated to share. I promise a Florida update tomorrow.

I'm sure most of you could care less but I just felt obligated to share.

SATURDAY, OCTOBER 18, 2008 09:38 AM, CDT
Florida- Part 1
Give Kids the World is simply an amazing place. Florida is beautiful. Lovely tall trees. Green everywhere. The kids loved it except the heat and it was pretty mild while we were there. We were picked up in a limo from our house and the kids loved it! I was surprised they were OK not being in there car seats with only lap belts. We arrived at the airport and were greeted by American Airlines who took all of our bags and checked them. Then we were escorted upstairs to a party. Diego was a bit overwhelmed. Once we were on the plane he was very happy! He slept most of the trip and Lilia was really good. We arrived at the airport to a welcome party and Diego was like not again! We were helped with our luggage to our rental car and given directions to the the village. The kids were so excited to be in Florida! We arrived at the village and were shown to our two bedroom villa. The kids loved it. We then went to The Gingerbread House for a nice hot dinner followed by banana splits and ice-cream at there ice-cream shop and a whirl or two on the carousel. We tired early and decided to go to Animal Kingdom the following day.




SATURDAY, OCTOBER 18, 2008 03:51 PM, CDT
Florida- Part 2
So on Saturday we headed to Animal Kingdom. It is such a beautiful place. Like the fanciest zoo you have ever been to. The Safari Ride is incredible. Your eye cannot see where the savannah ends. We saw so many animals which included giraffes, elephants, rhinos, hippos, and so much more all living in what looks like there natural habitat. The rest of the park is great as well. The kids loved it! Dinoland was small but nice. The park closed at 5 pm so we went back on Sunday for a half day and still did not see all of the park. After Animal Kingdom we headed to EPCOT. Diego loved it there. He is such a little sponge so it was right up his alley. They also had the food and wine festival which fits perfectly with there international cities World Showcase which is really neat. Wish we would of spent two days here. We ended the night with firework and they are really the best there. They say the best show in the US. We did not get home until 10 pm this night! We will definitely go back to EPCOT and Animal Kingdom in the future. We were all in need of a break, especially Diego so we decided to just hang out at the village and go to Gator Land the next day. Both of the kids loved this place! It takes about 2-3 hours to visit and has huge swamps a couple of shows and a nice amount of snakes and other reptiles. We had fun playing in a big downpour as well. I could just sit at the swamp and watch the birds and alligators for hours. We fed them too.

Then we were escorted upstairs to a party. Diego was a bit overwhelmed. Once we were on the plane he was very happy! He slept most of the trip and Lilia was really good. We arrived at the airport to a welcome party and Diego was like not again!

MONDAY, OCTOBER 20, 2008 09:20 PM, CDT
We had fun at the aquarium on Friday and at the zoo on Sunday. We also celebrated my birthday yesterday with a yummy dinner and Hershey's chocolate cake that the kids and I made from scratch. We are in the hospital and chemo will start at 11pm. We had a REALLY long day. I will get to the rest of our Make-A-Wish trip I promise. I honestly felt bad writing about our trip. I have been struggling with the death of a dear child whose Mother has been a great support through the rhabdokids site. Her name was Elizabeth and she was just 7 years old. Please keep her Mother Lynn and 4 year old brother in your prayers. Here is her website: http://www.caringbridge.org/visit/elizabethdoxey

It just does not seem like life should go on when a child dies.




TUESDAY, OCTOBER 21, 2008 10:30 AM, PDT
Diego is doing fine with the new chemo so far. Praying it is killing those nasty cancer cells. Diego said to bad our dog Rylie can't get a hold of cancer because he would rip it to pieces. Looks like we may be stuck here all week due to insurance issues. Frank will try to contact them today.




TUESDAY, OCTOBER 21, 2008 09:47 PM, CDT
UGH!!!

So Diego is off the trial drug as it did not seem to work and he cannot be on steroids for the trial. The steroids were needed to reduce swelling in his brain. So now we are back to square one with the insurance company. We cannot wait one day to start chemo so we have to do this now! Even if we end up with a bill. In the meantime we have to spend time on the phone dealing with this. It seems as though the HMO is going to approve this and I will need to talk to them about what exactly needs to happen to get the IPA out of the picture here when it comes to this. It is scary and stressful but I have faith that it will be worked out quickly.

FRIDAY, OCTOBER 24, 2008 05:21 PM, CDT
Looks like we are stuck here! Insurance company is trying to deny us. Very frustrating as this could mean more out of pocket for us. We all just want to go home! Including our trip it has been 3 weeks going on 4! Here is a poem I wanted to share.



I HOPE...

I hope you never have to hear the words, "Your child has cancer."

I hope you never have to hear, "The prognosis is not good."

I hope you never have to prepare to undergo radiation or chemotherapy, have a port surgically inserted into their chest, be connected to IV poles.

I hope you never have your child look at you with fear in their eyes and say, "Don't worry Mommy, everything will be okay" or "Mommy am I going to die?"

I hope you never have to hold your child as they vomit green bile.

I hope you never have to feed them ice chips for lunch.

I hope you never have to watch the "cure" you pray for slowly take away their identity, as they lose their hair,
become skeletal, swell up from steroids, develop severe acne, become barely or unable to walk or move, and look at you with hope in their eyes and say,
"It's going to be okay, Mommy."

I hope that you never have to stay in the hospital for weeks, months, or years at a time, where there is no privacy, sleeping on a slab, with your face to the wall, where you cry in muffled silence.

I hope you never have to see a mother, alone, huddled, in a dark hospital corridor...crying quietly, after just being told, "There is nothing more we can do."

I hope you never have to watch a family wander aimlessly, minutes after their child's body has been removed.

I hope you never have to use every bit of energy you have left, with all of this going on around you to remain positive, and the feelings of guilt, sorrow, hope and fear, overwhelm you.

I hope you never have to see a child's head bolted to the table as they receive radiation.

I hope you never have to take your child home (grateful but so afraid) in a wheelchair because the chemo and radiation has damaged their muscles, 35 pounds lighter, pale, bald, and scarred.

And they look at you with faith in their eyes and say, "It's going to be okay Mommy."

I hope you never have to face the few friends that have stuck beside you and hear them say, "Thank God that is over with,"...because you know it never will be.

Your life becomes a whirl of doctors, blood tests and MRI's and you try to get your life back to "normal".

While living in mind-numbing fear that any one of those tests could result in hearing the dreaded words...

"The cancer has returned" or "The tumor is growing."

And your friends become even fewer.

I hope you never have to experience any of these things...Because...only then...

Will you understand...

(author unknown)

SATURDAY, OCTOBER 25, 2008 09:55 AM, CDT
We are supposed to be at a friends housewarming party today and were hoping to see our favorite therapy dog Pandie and her sister Bella in a parade but instead are once again held hostage!

The poem I shared yesterday is very telling but I wanted to add that I have gained many more friends than I have lost. More people stand close than far. My dearest friends and strangers have done so much for us that it puts us in tears so many times. Friends who I had lost contact with check in on me and show they care. This often keeps us going when it all seems to much, too painful. Someone sends an e-mail, a prayer, little things in the mail for the kids, a meal and it means so much. The combined efforts of so many last year with the garage sale. The newspaper articles. The Diego Fund. This all helps but of course we wish we did not need any of it. Thank you all who continue to walk with us.

Diego's fifth birthday is in 18 days and I hope I can pull it off. He is so excited to be 5 and wants a pirate party with all of his friends.

MONDAY, OCTOBER 27, 2008 10:55 PM, CDT
Make-A-Wish - part 3

Finally! So day 3 we were tired so we decided we would go to Gatorland. We all loved it! It is really small so you can see it all in about 2 hours. Diego and Lilia held a baby alligator- so cute and Lilia and Daddy took a picture with a ball python! Lilia loved it! Diego thought she was crazy! The swamp areas are beautiful. Many crocodiles and alligators and beautiful birds. It was so peaceful that I could of stayed there all day. If you live in Florida this place may not seem so amazing I imagine. We all want to go back there. That night our friend came to our Villa who moved from California to North Carolina. Diego's best buddy from at least 8 months of age. We all had fun playing and seeing each other again. The following day we met up with them at Sea World. Diego did not feel so great much of the day. Poor guy. The shows there were not as good as ours in San Diego so if you are spoiled and live near San Diego I would skip that if in Florida. The rain was pretty bad that day so we headed out early and spent time at the Village and went to bed early for our last park day at The Magic Kingdom. We meet up again with our friends and had a very nice day. Again if you live near Disneyland as we do I would skip this park and Hollywood Studios which is or California Adventure Park. Disneyland is actually bigger and has more rides like the Matterhorn. That was a shock to me. We said goodbye to our friends :(. The next morning we left at 10 am for our flight home.


Diego is doing great with this chemo but is having some pain at night under his left arm. This pain started when we were in Florida. We don't feel anything there. I think they are doing an x-ray tomorrow. If the radiation gets approved we should be able to leave Thursday. We hope this happens as we want to go home and there is a benefit that I will post info on from 6-8 at a salon in Long Beach. More about this tomorrow. Keep praying for all of us. Diego the most of course. We are under attack from all angles it seems.

TUESDAY, OCTOBER 28, 2008 09:50 PM, CDT
I was going to write a journal about our nature adventures at City of Hope and in Florida. I will get to that one day soon. Our insurance company has officially denied us care at City of Hope. They say we are responsible to pay the bill that at last count was over $55,000 dollars! I wish I could give all the details that led to this decision but I can say that the Long Beach oncologist had a hand in this. I am so mad and frustrated. How can you expect a family in our situation to go to a new oncologist after all we have been through. We trust Dr. Sato and she cares about our child just as much as Dr. Calderwood did. If Dr. Calderwood was still here he would advise that we stay at City of Hope. They also have a musculoskeletal tumor board here. Well so does UCLA. We can go there but they don't know anything about Diego. How can they really be so cruel? So we need radiation to save Diego's life done in the next two weeks. Preferably next week. Hopefully we can work that out. Then we will temporally set up shop at CHOC with Dr. Sato consulting. I don't think they can take away that. Frank also got a call from a lawyer today who happens to be the son of the pastor that married us and he will come up to talk to me tomorrow. He said he believes this will go to litigation so we have to figure out how to pay for that. OK I guess God will figure it all out but man this is hard. Not being home and dealing with so much. Can hardly talk to Frank, it is as if we are separated as we have not lived together in weeks with being in the hospital. No time to break down, throw a fit or have a glass of wine. I know God has a plan can't he give me a sneak peek?

Thursday Night an incredible man who read about Diego in the Sun Newspaper has set up a fund raiser at his salon on Thursday night. His daughter is a cancer survivor. Here is the flyer for the event:

COME AND SEE DARTH VADER AND OTHER STAR WARS CHARACTERS
Thursday October 30th from 6:00 to 8:00 pm
@
Anthony Robert's Salon
1190 Studebaker Rd
Long Beach, 90815
Support Diego and the Diego fund and help him get the help he deserves.
*MAY THE FORCE BE WITH YOU DIEGO*

We will be stuck here. I believe we will not be able to attend. We really wanted to be there.

WEDNESDAY, OCTOBER 29, 2008 08:11 PM, CDT
OK, OK!!!! First of all Diego has been having pain in his shoulder and on his back where he had the lung biopsy. They did an x-ray of his shoulder yesterday and it looked good but the chest x-ray today shows great improvement. The initial tumor is almost gone and she believes it could just be scar tissue!!!! SO who cares about a huge bill! God is blessing us in the most important way! This chemo is working! Other news: WE ARE Home!!!! No they did not kick us out. The Dr. is working on us getting us free care for these two weeks so we are doing outpatient today and tomorrow. They also have trick-or-treating at 1 PM at the hospital tomorrow. I hope to get a couple of slide shows together this weekend. Our Florida trip, our hospital stay and Halloween fun. I hope Diego can go to school next week. We are not giving up on getting treatment at City of Hope.

TUESDAY, NOVEMBER 04, 2008 10:07 PM, PST
We missed the fundraiser as we did not get home from City of Hope in time to go. We thank every one who participated and especially Tony for setting it up and Mrs. Moons for helping.

Sorry I'm slacking on the slideshows. Not being home for long lent itself to needing to get a lot of things done along with just needing to take time to be lazy and do nothing! Who knew sitting on the couch drinking coffee could be so incredible! Diego continues to have pain. Please pray it will subside. It is worst at night. We are giving him dilaudid a form of morphine for his pain. I'm glad we took an x-ray before we left the hospital or I would really be scared. I'll try to update again tomorrow. Just wanted to check in.




WEDNESDAY, NOVEMBER 05, 2008 08:44 PM, CST
We made it to school today and Diego had a great day! Lilia and I stayed for music and playground time. He really had a great time. I'm trying to motivate her to potty train so she too can go to pre-school. She had a lot of fun and it was so nice to be able to do. Diego will go again on Friday. He still has pain, mainly at night. We upped his meds and he went to sleep for good about 12:30 last night and slept till 9pm.





THURSDAY, NOVEMBER 06, 2008 05:23 PM, CST
Diego will be 5 on Wednesday November12th! He will have a pirate birthday party on Sunday November the 16th at 1 PM. If you would like to attend please e-mail me for address and direction. Diego plans to dress up so feel free to dress up! I am also asking if anyone has any fun games to bring for the kids like a ring toss, etc.. please let me know. I will provide prizes.

MichelleFuentes19@hotmail (dot) com

MONDAY, NOVEMBER 10, 2008 08:47 PM, CST
Diego went to school today and cannot stop talking about his teacher! It is really cute. He had a great day which makes us all happy. I am fighting an insurance appeal to try to keep our Dr at City of Hope. Final answer will come Thursday. Diego is still in pain. Limbo is hard right now. I also would like to ask for prayers for this beautiful family that touches my heart in so many ways: http://www.carepages.com/carepages/ColemanScott




THURSDAY, NOVEMBER 13, 2008 11:19 AM, CST
We are taking Diego to the hospital. He has a fever. It looks like his Birthday Party will more than likely be cancelled. I'll update when I can.




FRIDAY, NOVEMBER 14, 2008 09:26 AM, CST
Diego has pneumonia in his left lung which could be the cause of most of his pain. He will have a bronchoscope today see if it is viral or bacterial. His party will have to be postponed. I'll update later.




FRIDAY, NOVEMBER 14, 2008 04:25 PM, CST
Diego's procedure went well and for all my cancer Mommies his ANC is 14,000! So yes we have white blood cells. All other counts great as well. He has been spiking fevers still like 3 in 24 hrs. Tylenol has been working though so that is good. We are at City of Hope. Insurance nightmare continues as we take our appeal to the next level.




SATURDAY, NOVEMBER 15, 2008 08:44 AM, CST
Diego continues to have fevers and is on oxygen. His respirations and heartbeat are high so the Dr does not want him to waste any energy eating so she is putting him on TPN which is nutrients through his vein. This is a first for him. He finally got some really good sleep yesterday and last night and his pain is under control. He hates the oxygen mask but wont wear the cannula which is the small one that get goes in your nose. Keep praying.

MONDAY, NOVEMBER 17, 2008 11:48 AM, CST
Diego has not improved. They did a CT to see if they can better recognize what is causing this. He continues to have fevers. I'll update when I know more.




MONDAY, NOVEMBER 17, 2008 08:30 PM, CST
Please if you can pray for Diego at 8:40 am tomorrow. He will have an ultrasound needle biopsy to try to remove fluid in his left lung and to try and figure out what exactly is in there. Pray that Diego will remain strong and will get some much needed relief tomorrow and can ultimately be healed.

WEDNESDAY, NOVEMBER 19, 2008 10:32 AM, CST
Sorry I did not update yesterday. We needed to speak with family first. Diego may have some pneumonia but the main problem is the tumors in his chest have grown considerably. We have had some tough choices to make and for now we are going to continue fighting. He continues to have high fevers, heart rate and respiration. I will update when I can.