SUNDAY, APRIL 06, 2008 09:32 PM, CDT
Diego is still good health wise. Homesick but left the room for over an hour and had fun in the playroom with Lilia. We were really concerned about Diego getting sick as he would throw up so much with is one night stays. 15 plus times and at the end there would be some blood. This would have been devastating since he already is on the slim side. He is on a constant zofran drip, along with periodic doses of benydrl, reglan, prevacid, and decadron. We are so thankful that he doing so well but he is sad to be here.

. . .

MONDAY, APRIL 07, 2008 07:09 PM, CDT
Diego did much better today! He was being a goofball most of the day. I think being off the other chemo really helped. We all cannot wait to go home. Lilia had a great time visiting this morning.

. . .

TUESDAY, APRIL 08, 2008 08:27 PM, CDT
Another great day! Diego has been really silly. He was scratching his hair today and I said are you itchy and he said I'm tying to look like a Pachycephalosaurus (yes I looked up that spelling). Later I moved him on up on the pillows on the bed and put his DVD player between his legs. He said that I am not comfortable, I look like a snow angel! So as you can see spirits are high. Only concern is a dry cough. Please pray it turns out to be nothing and he stays well. His WBC will be going down which are what give you the ability to fight infection. Hopefully we will be going home tomorrow early afternoon. We can't wait.

WEDNESDAY, APRIL 09, 2008 09:34 PM, CDT
Little Miracles! Diego did so well. Not throwing up and actually asking for food! He did not need a feeding tube! Amazing. Nothing seemed to work to control his nausea before. Thank God! He has truly protected Diego.

Thank you all for thinking about and praying for us. I am exhausted and far behind with my thank you cards. I cannot wait to get to them. Hopefully tomorrow. Just know I am so thankful for all the support here and through e-mails. Just that means the world to us. Keep praying that we stay fever free and out of the hospital. We go in for blood counts and exam next Thursday.

. . .

THURSDAY, APRIL 10, 2008 03:55 PM, PDT
Diego is still doing great. A few things I left out of our hospital stay. We reached the 3rd floor on Friday. Waiting for the secretary to get off the phone I just started bawling. Nurses hugged me others gave me compassionate looks and the child life and nurtitionalist quickly walked us to our room. putting there arms around me as we walked. It just reminded me that we came back to right place. They truly care for our family. We had a great conversation with our social worker and our favorite nurse told us he was really sorry and cannot imagine what we are going through but to please let him know if he can do anything or if we just want to be left alone. Whatever, he understands. I could go on forever about what a great person this nurse is and how excellent he is at his job. The child life specialist showered Diego with gifts and found all the toys he loves to play with. Then before we left the nurse coordinator who is a cancer survivor herself heard that Dr. Calderwood wanted to send us home with a little catheter in his leg so we did not have to poke him every night for his GCSF and she remembered she had a sample and brought it up for us to use! They really are like a family there. This is why we love our unit and so much more.

WEDNESDAY, APRIL 16, 2008 10:13 PM, CDT

Sorry it has been so long since we updated. I think we officially avoided a neutropenic fever! His white blood cells are going up. Diego did have a fever these past 3 nights but they were just below 100.5 and went away. We may still need a platelet transfusion. Diego has mouth sores and has to eat soft and cool foods. We are all struggling with being back in the fight but are grateful that we are blessed so far. We plan on going to school tomorrow. Diego wants to go but insists I stay with him. Frank is home on stress leave so that makes that easier. We see the oncologist and Diego will get fitted for his prosthesis tomorrow and then we see his oncologist at 4. On Friday we are going to California Adventure thanks to free tickets from a neighbor. We are so excited!Then the following Friday we are in for round 2. Thanks for continued prayers. We will have scan again after his 3rd round of chemotherapy.

SUNDAY, APRIL 20, 2008 12:30 PM, CDT

I had to stay with Diego at pre-school. I guess I will for a while. He did have fun though and that is what is important. Diego did OK with the casting on Thursday. He will try on a mold next Thursday when we see Dr Femino and then we should get his prosthesis in a couple of weeks. We then headed toward Long Beach for our oncology appointment having to take an alternate route due to a bomb scare on the 605/5 interchange. We went to California Adventure on Friday and that was really nice. The Aladdin Musical and Electrical Light Parade were great! Diego's hair started falling out today. He said he likes being bald. It is just another reminder. We are headed to friends for dinner and playdate this afternoon and will go to the oncologist for counts and a visit tomorrow. If all is well we go in for round #2 on Friday. We also take Diego for an eye exam and I think a new lens prescription on Wednesday. Good to get these appointments done while counts are good.

WEDNESDAY, APRIL 23, 2008 11:14 AM, CDT
We had a great time at our friends Sunday evening and a wonderful week! We went to the park on Monday. I went with Diego to school on Tuesday and he really had a good day. I was sad that he wants me to go with him now but it does put my mind at ease to be there in case anything comes up health wise. We then went to the park and home for naps and baths. Then it was off to family night and book fair at Diego's school. The kids had a great time. We finished of the night with a trip to Island's and of course reading our new books! This morning Diego had an eye appointment and his vision has improved in just 3 months! He will keep the same prescription and go back in 6 months. We saw a different Dr today and he was great. We will see him again next time. In the scheme of things this seems small but it really makes us happy to know that his vision will be corrected! Thanks for the kind comments and verses in our guestbook. This experience is a rollercoaster and the support and encouragement really helps. We go in Friday morning for chemo.

SUNDAY, APRIL 27, 2008 12:08 PM, CDT

Well Diego is doing well. No vomiting and his spirits are as good as can be for a 4, excuse me 4 and 1/2 year old in the hospital. He has been doing homework or funwork as his teacher calls it. Reading to us with his Bob books. Loving his very cool new dinosaur books from Mrs. Moons and looking at a sea shell his little sunbeam friend Julia found and gave to him at school on Thursday. He should feel better tomorrow when he is done with is 48 hr doxyrubicin infusion. He will most likely get red blood cells today or tomorrow which will give him an added boost. Don't worry we have our running shoes on! I bought Diego four new animals for this trip. A chipmunk, beaver, hedgehog and a wholly mammoth. Now he is asking for a Koi Fish and Liger! Cannot find those so if anyone does send me a link or message as to where you saw them. Then a lipluerodon, deinosuchus (both dinos), a tadpole that changes into a frog and a porpoise! I'll be busy online finding the best deals on those. Goodness! I need to set up a toys for Diego fund! LOL! If all goes well just four more chemo stay to go. Thanks for checking on us and I'm happy to be in an air conditioned room while it is 90 degrees out there.

THURSDAY, MAY 01, 2008 11:14 AM, CDT
We came home yesterday at 2ish. Diego is doing great but gets depressed in the hospital. I'm not sure about children other than family visiting. I did see a child's nephew there. I know he would love to have his friends visit so I will ask. We said goodbye to Diego's best buddy since he was about 8 months old last night. He was glad to see him but sad that we can't meet up at the park anymore. Please pray we stay fever free and out of the hospital this next week. Also that he remains cancer free.

It's a sad time for my family and Diego's...

We have sold our houses in Long Beach, and the family has left California today... Last night, Karen and the kids visited Diego in the hospital, as Diego and Justice have been best friends since before he was 1 year old.

Diego and Justice will miss each other.


Please take the time to leave Diego and his family a note in his guestbook... Michelle reads all of them to Diego, and it makes him feel special to know that so many people all over the world care about him.

http://www.caringbridge.org/visit/diegofuentes

WEDNESDAY, MAY 07, 2008 01:56 PM, CDT

Diego is doing great. No fever so we get to stay out of the hospital! We plan to go to school tomorrow after his 8:30 Dr appointment. Many of you remember Miles. I wanted to pass on this article which includes his speech for the Leadership in Courage Award from the Sarcoma Foundation. It is such a powerful speech. http://www.freep.com/...505/NEWS03/805050342

SUNDAY, MAY 11, 2008 04:29 PM, CDT

Happy Mother's Day! Mine has been really nice! We had a wonderful breakfast with my Mom and our friends at their house. My Dad sang a beautiful song he wrote for us.

Diego is doing really well. He went to school on Thursday and a birthday party. We went to the park with his buddy from school on Friday, had dinner at CPK with my parents and then came home and watched a movie Friday night. We flew kites at the beach yesterday and are going to Sea World tomorrow. Diego goes in for chemo number 3 on Friday. He will have scans sometime after that. If he continues to be disease free we will be half way done! Thanks for your continued support. Also don't forget our Torch Run to benefit the cancer center at the hospital. I posted the link in the about me section. Every dollar counts. *

Miles speech for the Leadership in Courage Award from the Sarcoma Foundation. It is such a powerful speech. http://www.freep.com/...505/NEWS03/805050342

THURSDAY, MAY 15, 2008 08:23 PM, CDT

We go back into the hospital tomorrow. We will also get an MRI of his arm while we are there. Most likely Monday or Tuesday so pray extra hard. We also may get other scans done so we don't have to do them outpatient. I was praying with Diego tonight and at the end of the prayed he added and that we can trust you! Wow, just what Mom needed to hear right now.

Don't forget our Torch Run to benefit the cancer center at the hospital. Less than a month to go! I posted the link in the about me section. Every dollar counts.

SUNDAY, MAY 18, 2008 02:22 PM, HST

Diego is taking his nap right now. So far all in uneventful here. I did find out that his little buddies can visit as long as they are well. Diego's new thing is going in the wagon. This require one to pull the wagon and one to push the IV pole. It is tiring and he would do it all day if we let him. It really lifts his spirits and got him out walking when it was just me here. We have also visited the playroom everyday and that has been nice. Lilia loves it in there. We should have his MRI tomorrow or Tuesday. Please pray that Diego is disease free still. Also pray for our friend Ariel who also has her MRI on Thursday http://www.caringbridge.org/visit/ariel_gariano. Thank you to those who have donated to the torch run. We are more than half way to our goal!

Don't forget our Torch Run to benefit the cancer center at the hospital. Less than a month to go! I posted the link in the My Story section. Every dollar counts.

http://www.caringbridge.org/visit/diegofuentes

HERE is the link to donate on Diego's behalf in the Children's Cancer Torch Run.


And a BIG thanx to all those who have donated!!!!!! You guys really rule!!!!!!!!

WEDNESDAY, MAY 21, 2008 02:40 PM, CDT

Were home! Not sure when we will get MRI results but will post when we do. Diego had a blood transfusion last night from our direct donor from Frank's work. If you would like to donate blood the link is in the link section. Diego has O but all types are needed. You can direct donate for Diego and if you are a match they hold the blood for him. Keep praying for good results. Diego is so happy to be finally home again. Also please pray for our friend Ariel who also has her MRI on Thursday http://www.caringbridge.org/visit/ariel_gariano.

Thank you to those who have donated to the torch run. We are more than half way to our goal!
Don't forget our Torch Run to benefit the cancer center at the hospital. Less than a month to go! I posted the link in the My Story section. Every dollar counts.




THURSDAY, MAY 22, 2008 08:28 PM, CDT

MRI results are inconclusive.We have a tiny little mass, 8mm.We knew this. We still do not know what it is. I think the Dr wanted to be sure that it was not growing behind where we feel it. He wants to watch it via ultrasound every 2 weeks. So just pray that what ever it may be that his body heals itself of it and it disappears! I am feeling good knowing that it is very small. Diego does not mind ultrasounds either. Diego also told us that he does not cancer anymore. Also while we were in the hospital his 7 year old buddy who had rhabdo also in the right forearm and was diagnosed just about 6 weeks after Diego visited with his Mom and twin brother and sister who are 4. Diego had so much fun! The nurses were so surprised at how silly he is.




FRIDAY, MAY 23, 2008 02:35 PM, CDT

Wanted to clarify that this tiny mass or scar tissue as I would rather call it has been there since they biopsied Diego's lymph nodes and it is just under the scar line. His lymph nodes were negative for cancer.





SUNDAY, MAY 25, 2008 11:06 AM, CDT

It is wonderful to be home! Diego is doing well. If all goes well we only have 3 more inpatient treatments to go! We go back in Friday the 6th for our 4th treatment and July 18th if counts stay up would be our last chemo. We are looking forward to the torch run and everyone is invited who wishes to attend. It takes place right behind The Aquarium of the Pacific on June the 14th. You may want to bring a beach chair. We will set up next to Diego's starting point. Email me if you would like more information. MichelleFuentes1(at)hotmail(dot)com

Diego is asking to go to the Zoo so we plan to go when his counts go up.





MONDAY, MAY 26, 2008 07:29 PM, CDT

I used to have a social life! People invited me to parties and BBQ's. I guess once you can't go so many times because the parties land on the wrong weekends they stop asking. I was thinking of life before cancer today and since I missed it I decided to make buffalo chicken breast strips with homemade blue cheese dressing and Frank is making blue cheese burgers and I'm adding sweet potato fries. Another weekend of low counts. We actually only have one good weekend every 3 weeks. Normally if we were not invited anywhere I invite people over but entertaining and my new life don't work as well. I used to love doing parties at my house. Today we are thrilled to not be in the hospital and that Diego is alive. We are blessed by friends and family who have stuck by us and been our crutch when we are weak. Life changes and I cannot wait for the day when I am hosting and a bit more carefree. For now I'll take good food and our family under one roof.

Thank you to everyone who has donated to our torch run! We are almost at goal! We posted posters and flyers at Frank's work last Thursday too. Remember those who donated it is tax deductible!


Hope you all had a relaxing weekend.

WEDNESDAY, MAY 28, 2008 08:06 PM, CDT

So the pirate obsession continues! No FEVER!! Counts should be up by now. We check them tomorrow and go to school. We are officially half way done! This was sent to me by a fellow Rhabo Mom: "For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all." 1 Corinthians

That about sums it up!

FRIDAY, MAY 30, 2008 09:04 PM, CDT
First of all I think Diego thinks he is Jack Sparrow! His WBC was up to 7800 yesterday! The highest yet! We are getting ready for the warm weather by cleaning up the back yard and setting up pools for the weekend. The oncologist said he sees no reason for scans besides the ultrasounds until the end of treatment. He thinks it is a lymph node that was irritated by the biopsy. We go back in for chemo 4 of 6 next Friday. Until then it's all about fun! Diego kept saying my counts are up. I even heard him singing it while running around the backyard today.

TUESDAY, JUNE 03, 2008 06:44 PM, CDT

We had a great weekend! Made up for last one for sure. Pools were up and BBQ in full swing! Makes you forget about the reality of our life for a week! Thank God his cousin made it as he does horrible with disappointment and it really breaks my heart to see him disappointed as he already deals with so much. Diego had a great day at the school and park today and tomorrow we are off to the zoo. Diego's last day of school until September will be Thursday. We go back in the hospital Friday and I hate it! I know how much he will want to be with his friends. I guess the best I can do is bring them to him. It was amazing to see how much a visit from his friends brightened him up the last stay. He went from not wanting to get out of bed to being so silly that he managed to become unhooked from his IV line! We have one visit lined up and I'm working on two more.




WEDNESDAY, JUNE 04, 2008 02:42 PM, CDT

So we did not make it to the zoo today and I guess yesterday's post was premature. Diego had a 102 fever last night at 3 am. Because his counts are good, we were able to give him a fever reducer. So now we are watching and waiting. I called our Dr and he believes it is a virus. We hope the fever does not return so he can attend his last day of school. We see our Dr tomorrow afternoon. Diego got over missing the zoo better than I thought he would.





WEDNESDAY, JUNE 04, 2008 11:16 PM, CDT

Diego has a 103.5 fever and is headed to the hospital. Will update tomorrow.

And hurray!!! We are over the top in our donation goal for Diego's upcoming Torch Run to benifit children with cancer:

THURSDAY, JUNE 05, 2008 04:30 PM, CDT

Well last night was fun! NOT! We arrived at the emergency room and with the bald head and surgical mask and were rushed right in. We then spent 11-5:40 in the emergency room. The Tylenol kicked in and he was dancing and clowning around with all the nurses and staff. We finally fell asleep around 4:30 and were woke up 5:30. We arrived at our room and were left alone at 6. Diego slept until 10 and spiked another 102.5 fever at 11am. We did a chest x-ray and consulted with infectious disease. She said she did not expect anything. His ANC is 10,000 so we are trying to figure out what is going on. Hopefully not a central line infection or anything serious. He is on 3 antibiotics, an antifungal, and antiviral. Hopefully the antibiotics will kick in and the fever will be gone. I hope we know more tomorrow. It takes 3 days to rule out most central line infections. Thank's for all the prayers and words of encouragement. I did have a small breakdown this morning thinking of how Diego would miss his last day of school and all the things Cancer has taken. I was really tired mind you but I think I needed a good cry. I am filled with much more peace now.





FRIDAY, JUNE 06, 2008 12:03 PM, CDT

Not exactly sure what Diego has yet but the Dr's believe we will know soon and that he will be fine in a week! The Chest CT and X-ray show that he does have a small amount of fluid in his left lower lobe. We will go down there with a tube and put in some saline and draw it out so we can treat it with the appropriate medication. We caught it quickly so he should be fine in 5-7 days. It could be bacterial or viral pneumonia or a fungus. Since it is in the early stages and Diego's immune system is acting like that of a normal child right now this will just be a minor set back and the Dr believes we will be at the torch run on Saturday! Then we will come back and do our 5 day chemo. Diego's ANC was actually 22,000 yesterday! So his body is fighting. Today it is 12,000 so possibly the antibiotics are killing a bacteria. Will update when I know more. Thanks for the thoughts, prayers and kind words.

SUNDAY, JUNE 08, 2008 07:37 PM, CDT

Sorry guys. Meant to update yesterday but Diego is keeping us on our toes! They decided to do a chest x-ray Monday before doing the bronchoscopy So pray that it has all cleared up and we will not need one! He would have to be sedated and I'm not sure what it could be if all of the antibiotics, breathing treatments and antifungal are not doing the job. He sounds clear but he sounded clear when we arrived. His fever spikes are gone, only one low grade fever today which could of been a result of a medicine he is on. He really has kept his spirits up but wants a constant playmate and stays up really late as he is not being knocked out with benydrl like when he is on chemo. I will update tomorrow after his chest x-ray results.




MONDAY, JUNE 09, 2008 08:00 PM, CDT

Good News, bad news...

So the good news is the chest x-ray shows over 50% improvement. The bad news is he has spiked two 103 fevers in the past 12 hrs since I took him off the tylenol and motrin. So we will do a bronchoscopy tomorrow. He will be sedated. We will not have immediate results from that. Hopefully by Friday we will know exactly what is going on or his fevers will cease. Not sure now if we will be at the torch run. Diego seems fine otherwise. He is getting a blood transfusion tonight. I hope I can get some sleep. Please pray it goes well tomorrow and that his fevers go away.

TUESDAY, JUNE 10, 2008 01:53 PM, CDT

Diego is back in his room. The procedure went well and he woke up great. He also has not had a fever since a low grade one at 10pm last night. They said there was not much in his lung and we may know it is bacteria, virus or fungal tomorrow. While Diego was in the operating room I went to the gift store and they usually have pretty basic stuffed animals but this time they had one muircat! So exciting. He loves it. I actually did get some sleep last night and Frank will sleep here tonight so I can get some rest. So keep up those prayers for no fever and that we can attend the torch run on Saturday. This verse from a fellow cancer Mom really got me through:

Philippians 4:6-7 (New International Version

Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. 7And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.
Thank you Shannah.



WEDNESDAY, JUNE 11, 2008 09:58 AM, CDT

NO fever since Sunday ! Thank God! The preliminary results are it is most likely a virus. Looks like we will be at the TORCH RUN!!! Not sure when we will be released. Thanks for all the support and prayers. I will update when I know more.



WEDNESDAY, JUNE 11, 2008 06:16 PM, CDT

Diego is now unhooked from the IV poll and all medication will be oral! Looks like we are going home tomorrow! What a turn around! As if the news could not get any better we called Make-A-Wish about our DisneyWorld vacation and they said if we can go October 3-10th we will be on a private flight with 25 other Make-A-Wish families non-stop from Los Angeles to Florida. There will be a big party thrown by them when we arrive. Crying tears of joy as I type this. God Speed. Only one family from our chapter will attend! Amazing, magical and we are so excited!