When asked our girls what they were thankful for this is what they said:
Pink car
sleepovers at grandma's
nana's house
going boating
sisters
cousins
dora and diego
school
mommy tickling parties
daddy giving them cartwheels
This season we are also thankful for our family being well. We want to wish you and yours a happy holiday too.
Posted via my Android mobile phone
We had a scare recently. Seems the girls both want to run away every chance they get. Perhaps is a strong sense of independence or the smell of adventure on the wind, either way it has been a little unnerving. Yesterday morning I was getting Nicole dressed and I thought to myself "it's too quiet." Those of you who are parents or have taken care of children know this eerie silence. So, I popped down stairs and the dead bolt on the door was unlocked and the door wide open.
At that moment, I became the bionic man scanning, running, leaping with one singular mission, to find my baby! Now, as an aside, some of you told of the perils of confronting a mother bear and her cub. Now I can't compare the two I but I was sure at that moment I could have run through a brick wall if I had to. I guess I was getting in touch with my feminine side :). BACK TO THE STORY. So I flew out of the door and my mind was calculating and churning like a super computer systematically exploring areas of highest. Rounding a corner I saw her. Walking down the street and of course jumping in a puddle along the way. I grabbed her and held her extra tight and gave her a kiss. I'd like to say I was OK right away but it took a good hour to calm my nerves of what could have been.
As I thought about it throughout the day, I remember when I ran away as a kid. Stick over the shoulder and some supplies wrapped up in a handkerchief as if I was going to take on the world. When my parents found me They were so afraid, the kind of afraid that has complete disregard for all social rules. See they didn't care about anything but getting me back in their arms. I think God longs to have us in his arms too. Even though He's never feels out of control, I bet His heart is heavier than we can fathom about His kids (all humanity) too.
Hello everyone! I just wanted to send out a quick message that we are doing well. Swimmingly in fact. We are in the process of rescheduling our Make A Wish, Sea World trip. In the mean time, we stumbled upon a great opportunity. We've been given tickets to go see Elmo tonight at the Oracle Arena in Oakland. Through the generous gift by the Nicolas Colby Found they've given us Luxury Suite tickets to go see Elmo's Green Thumb. I know we are going to have a great time, especially since we missed our Breakfast with Elmo at Sea World. What's cute is that all week Nicole's been carrying around her Elmo doll in preparation.
Dana and I wanted to take an opportunity to communicate that we've recently felt so indebted to so many of you. Our family, friends, doctors, nurses, pastors and even donors (like Make A Wish Foundation and Nicolas Colby Fund among many others). Our fear of feeling alone in this fight with cancer has never been farther from reality. Thanks again for all of your prayers and support. We'll say hello to Elmo for ya! - The Orlando's
Some may not know but we were away for a few days but now we're finally home. It's been a tough week with 3 hospital visits, one at Stanford for 2 days. All is good now. Our friends at Dominican and Stanford pulled together and figured out a plan of attack! I love those guys!
Quick Synopsis: Docs determined Natalie did (does as of this moment) have a bacterial blood infection. This is again what they avoid at all costs. Here's the good news on a couple fronts: ... Dominican found it on accident after they stopped observing her blood samples (6 days past our first blood test). Apparently, someone lab worker was just walking by and glanced over at Natalie's blood sample and noticed something odd. Upon looking closer, they spotted a type of strep bacteria. Finding it is half the battle but seeing how one can kill it is another issue. So docs determined it was not a very robust bacteria and sent us home with some by-mouth antibiotics. They said it should be out of her blood stream in no more than 12 days!
Though we missed our Sea World trip I am glad things worked out the way they did. We could not of imagined flying to San Diego only to be admitted the entire week. We'll have do do some serious schedule changes to get back on track but we are up for the challenge! Thanks for your prayers, I had some good "God-talks" with friends and staff while we were away. Everyone is so great up there, in some ways it's like another home!
The Orlando's
You will appreciate this. Natalie’s teacher was teaching the concept of "INSIDE." Last session Anne (our amazing home school teacher) has Natalie put bug stickers "inside" the boarder of a picture of a leaf. With stickers ranging from 1-6 then she had Natalie point to a sticker with a number on it and reached "inside" a container full of tongue depressors. Natalie counts them out then put them back "inside" the container. I have really enjoyed seeing Natalie's mind reaching for these concepts. She's really getting all the creative ideas Anne brings each week.
She is already recognizing all her letters now. Anne thinks she's going to be a good reader, which is so important, especially nowa days! Natalie loves learning and we love watching her. We have no hesitation that she going to be ready for school (away from home) when that phase of our plan rolls around. Since Natalie's birthday is January, she'll not start kindergarten this September, but out plan is to begin attending away from home school in the Fall. Then transition to using the school bus! (pray for that!). .
The big news is Natalie has officially begun walking (more than scooting). It's been a few weeks now and all the success can be attributed to our amazing Physical Therapist Diane Attsat. When insurance failed to pay, she stepped up and is offering her services virtually for free. Dominick and Dana are trading her for odd jobs to cover the PT service service but, the quality of work she's accomplished, (we all agree) Natalie is getting the best end of the bargain.
Dom (Sr.) had an old tricycle put away, that use to be Dominick's when he was a little boy. He refurbished it and we're planning on introduce Natalie at her next Physical Therapy session. Last therepy session we went to the park to help her to climb. Natalie is going to be a great climber becase she has such great upper body strength (when she wants to use it). We just have to show her the advantages of being mobile, and she's getting it!!!! Tha's all for now!
In addition to the prayer team I asked some of my friends on face book to pray and they did. This morning we got up at 5ish am and headed over to Stanford Children's Hospital. All was going according to plan right up until the moment we were ready to go into surgery. All the papers were signed, tubes and monitors were hooked up and all the different surgical departments had consulted with me regarding what was going to happen over the next two hours.
So, right before we headed out the door, the primary surgeon popped in and met with me for a minute. She asked if we tried fixing the line with a special procedure I had never heard of - of course I said NO. This "Plan B" was less risky since it was a procedure not a surgery. It would attempt to fix the placement of the tube (that delivers chemo directly into Natalie's heart). She then said if this new "Plan B" doesn't work, we can get surgery later today. I said, "OK, good plan!"
The surgical team called over to the Stanford (Adult) side of the hospital (since this is where the procedure would be taking place). Wouldn't you know there was an immediate opening (Never happens). I gowned up with a smock, mask and surgical hat and helped calm Natalie down as Anastesia put her under once we got there. I said goodbye and waited outside. 10 minutes later they came out. This was odd considering the team just told me it would be an hour long procedure. The first words out of their mouth was "All's fixed!" They said, "we didn't have to do anything. The tube apparently flipped back into place all by itself as they were surprised when it showed up on the x-ray monitor." AND it's in perfect placement.
Later that day as we met with our Oncologist (who ordered the surgery), said she didn't know how it flipped out of place. The angles were pretty sharp and seemed really unlikely to have come out of place and back into alignment again. Though the Surgeons claimed the issue could have been caused by a simple coughing spell, I choose to think IT WAS SOMETHING ELSE. Thanks for praying everyone :)
The Orlando's :)
We're continually being reminded in new and fun ways that our kids are growing up. The other day we took a long drive. As usual, the hum of the tires put the girls to sleep.
When Natalie woke up we heard her say the word, "Boat." "Were you dreaming you were on a boat?" we asked. She immediately said, "yes," as she rubbed her eyes. Dana asked, "Were you on the ocean?"Again she said in a sweet voice "yes!" "Were there fish?" "No!" she replied emphatically. We asked "Were there birds?" She smiled, "Yes." Then she pointed up as if to describe more of her dream, "Moooon!" Dana continued "Oh, you were on a boat at night? "Yes" she said. I then added, "Was mom there?" of course... she said "Yes!" Then she babbled a long string of words. Who knows what she was saying, but I like to imagine that she was saying that we were all there, enjoying the moon on the water, content since we were all together. What a fun insight it was into the dreams of our little 4 year old.
We often wish our kids can stay sweet and innocent like this forever. It's in these times we get rare views into who God has created(ing) them to be. More the reason to fight against the currents of our busy schedules, to be present as much as possible, because this time only comes once.
Last night we found a ripe opportunity to share with the joys of sharing with Nicole. This opportunity came about as the following drama unfolded: THE FOLLOWING IS A TRUE ACCOUNT. NO NAMES HAVE BEEN CHANGED TO PROTECT THE INNOCENT.
The Girl's love pretzels and they often can be seen walking around the house carrying little bowls of this wonderful "God given" snacks in them. Since Nicole had control of the entire bag Dana and I thought it could be disastrous for a kid to have that much goodness, so we tried to help her put a few in her's and her sisters bowl.
"OK Nicole put some pretzels in your bowl." Which she did. Then immediately after we prompted her to place a few in her sisters bowl. She reached into the bag and grabbed a hand full only keep filling her own bowl with more. This happened a few times as she contemplated relinquishing control of the bag. We said, "Nicole, put a few pretzels in your sisters bowl, so you can "share."After a few more hand fulls it seems she couldn't bring herself release her little handful of pretzels. It was the the hand just hovered there wanting to let go but the brain couldn't. The hand often diverted willingly to the mouth.
Finally she reached into the bag and pulled out a lonely, tattered and broken pretzel. This was it we said, "Come on Nicole you can do it!' 'PUT THE PRETZEL IN YOUR SISTERS BOWL..." She did it (of course she took a bite out of it first but something is better than nothing).
"Good," we said outloud, "Now take it to your sister." Each step toon an eternity as she made her way across the room. You could almost see her mind workig as she pondered the lone, injured, half eaten pretzel in the bowl. When she arrived I can faithfully report she stretched out her arm and handed her sister the bowl and did share. THE BAD NEWS WAS AS NATALIE TOOK THE BOWL, NICOLE TOOK THE PRETZEL AND ATE IT.
You don't win 'em all!
Recently we've seen Natalie explore the emotion of sadness. It's odd because we've noticed (after hours of detecting observation) that she goes to distinct areas of our house and pretends to cry. We talked about this a bit and said why does Natalie go to the kitchen and the corner of her room to fake cry? Maybe she is hiding. Maybe she wants us to find her. Or, maybe, she's looking for attention. In fact, what if she's calling out for attention rather than exploring the sad set of emotions?
After much reflection Dana figured it out! It turns out it has nothing to do with attention or hiding, but everything to do with the PLUG OUTLETS. Plug outlets? Yes! When Dana pitched her theory to me I thought she might have fallen off her rocker. Initially I couldn't connect the dots. Scratching my head, I thought to myself, maybe it was an ambient electrical current that triggered this emotional response. But since that was a stupid idea, Dana couldn't have meant that. It hit me when she said go look at the plug.
Click here to see the plugs sad face :(
This was a great holiday. Perhaps most notably was Natalie's confidence in walking. We received a special call from one of Nat's former Physical Therapists. After some time of Dana and her chatting she offered to give free Physical therapy to Natalie until we could get the insurance issues figured out. After one session yesterday Natalie has a new found confidence. Perhaps one of the most heartfelt moments was when my mom took her to school. My mom held her hand and they walked together out the door and to the car. It has been a long time coming but I never thought it would be so sweet. I feel so blessed!
Since Natalie's birthday 4th birthday is soon approaching I was digging through some old-ish photos. I fuound this one of Nicole 365 days ago (6 months old). Now Nicole is 1.5able to say three word sentences, climb stairs, jump off the couch, walk around in mom's shoes and throw a fit (she's not too old to stand in the corner though!).
I am amazed and reminded how fast they grow up. I keep telling myself to savor every moment. because a moment can turn into a week, and a week can slip into a month, and so on...
Anyway happy birthday little sweet Natalie. Mommy and Daddy are so proud of you and love you more that we can share!
Well it's official! Natalie took her first steps all by herself this evening. There were rumors (from the grandparents sector a week ago) but you never know about those people. They're always looking for the edge. Heck, according to my mom Natalie and Nicole are multidisciplinary genius' in 10 industries and counting :).
Natalie took FIVE LARGE STEPS directly toward her mom(Dana) tonight. I'll leave out the part that she was totally buck naked...you didn't hear it from me! Well I guess there's nothing left for her to accomplish but to get a job. It's a heck of a time to enter the job market strong into the recession, only 3 years old... But, I guess everyone has to start somewhere.
Missing ya'll -- Dominick
Hey all!
The latest on Natalie is that we are praying that her IV lasts the till Tuesday. This is highly unlikely but since Surgery is moving departments when they are available it doesn't' make much sense to put in something better than and IV if it's only going to be in for a few days.
If we can get the IV's to last till Tue (and we are able to have consecutive Negative blood cultures) we can put in her new port. She has to get poked every morning to draw labs, cultures and misc other tests. This is not fun and her arm is rather black and blue. She's tough though and we are enjoying our time together. Lots of Elmo, video games, hard boiled eggs and coloring.
Specific Requests:
- IV doesn't dry up, make it till Tuesday
- New port goes in on time
- Multiple negative cultures in a row
- Her little right ankle does not become sore because it's in a cast-like brace (keeping her foot pointed) in effort to keep IV flowing smoothly
Praises:
- Her counts are up and her immune system is full steam ahead at 2,000+
- Natalie is in great spirits (too good to be true)
- No fevers have surfaced for a long time
--Dominick
Hello everyone!
It's been a long time since there has been anything to report about Natalie but we could use your prayers as she is sick. We actually have (maybe wrongly so) allowed ourselves to think things are pretty much back to normal. Well to our surprise Natalie just recently has been admitted to the hospital again. But we are all doing pretty well now.
The serious condition of a bacterial blood infection is what the doctors feared Tuesday 11/18/08. Because of a fever rushed from home to the local ER. After a night there we thought we'd be heading home but we found out her immune system was nearly zero from this bacteria. This being the case we were taken by ambulance to Santa Clara Valley Medical instead of Stanford because a lack of available beds.
Also pray for Nicole who misses us. She has a cold so we are not able to see her because of the risk of getting Natalie sick. My mom has been taking care of her at her house for nearly a week.
Natalie is doing so well now. You wouldn't even know she was sick! She plays her instruments (cat piano) and the shakers, takes rides waving to the staff in her little wagon, and enjoys only the company of a bag of pretzels these days. The doctors have done a stellar job at targeting the bacteria and being thorough in her care. We are praying for:
- Two negative blood cultures (making sure no bacteria is present in her blood.
- An immune system rating of 500 (she's 200 now and you and I are 5,000)
- Two consecutive days without fever.
Love you all,
Dominick
Well, it has been a full year since Natalie's diagnosis. Last year at this time (on Dana's birthday) our lives were turned upside down with the news of cancer. I remember perched by her bed side crying a lot. In retrospect, I feel so thankful we've made it so far. We have 1 year and 4 months left of treatment then another 5 years of checkups to be considered healed from this terrible disease. But, there will never be a time as hard as those first 30 days (I pray).
This Labor Day we are heading up to celebrate our anniversary of our great battle, just north of Sacramento to a town called Berry Falls. Camp Okizu will be the site of where we we will get to reflect on this years journey. I can say that it's been the grace of God that has delivered our hearts this far. He is good and there is no end to His great love for all of us.
Looking back I can think of two lessons that have stood out to me. First, our lives are temporary here on earth and we should never grow tired to fighting against the less important things that try to dominate over our precious relationships. Second, and maybe most importantly, "God is good in even the hardest of times." -- Until next time...
Thanks for standing by our side,
The Orlando's
Dana and I wanted four our family and friends to be the first to know that we are officially now HOMEOWNERS!
After an exhausting battle we can now consider ourselves officially strapped for the next 30 years. But it's a welcome addition to the family. I have to thank so many people, from Tax people, to Business partners to most of all our Realtor Genie Lawless has faught tooth & nail for every square centimeter, she has been the best agent anyone could ask for. Not to mention really sharing the burden with us from a Godly perspective. There is something about going through trials with other like-minded believers. All of us really knew if we were going to get this place it would only be by the grace of God, who deserves the ultimate thanks!
I wrote earlier:
"We have been praying for this house and if the loan funds, it will only be by the grace of God. So, we feel if it's God's will it will only be by Him. Just a few bumpy road highlights have been:
Kidney surgery (key player - out for a month), Signatures from 5 county "Government" officials hours before leaving for vacation, 30 days of physical therapy from a sciatic back injury (loan officer), 3 "nail biting" law firm contract reviews, nearly lost the loan for $125 appraisal mistake, 2 company closures, 8 extensions, 450 faxed sheets, countless PDFing and a dead cell phone (that got upgraded)"
....and a partridge in a pear tree! :)
Now the tough part begins - the remodel. All I have to say is BRING IT!
Thanks for all your prayers!
--Dominick & Dana Orlando
Thank you Everyone for your prayers!!! Praise our God for His many blessings!!!!!
We have all been praying for Natalie's platelet count to increase. Well, she has increased up to
85, which is awesome so far. Keep praying for it to continue. With this increase happening and her feeling so good, the doctor's feel that it was the medication that caused it to lower in the first place and that she is not in a relapse. PRAISE YOU JESUS !!!!!
She, Mommy, Daddy and Nicole went to spend the day with Auntie Stacie, Uncle Chris, Cousins, Christopher and Cailiegh. Natalie had a blast, playing with her cousins, which is so great that she is able to participate in the playing, instead of sitting on the side watching.
Thanks again for all the prayers and please keep them up and prayer for the family, to empower them with God's peace and strength.
Blessings to All
There really hasn't been any news for Natalie for a while and we have really been enjoying just being (more of) a normal family again. Since we are in the last phase "Maintenance" of her treatment (2 years long of less intense and spread out chemo) we are down to 1x per month Stanford visits.
I am witting because a few days ago the Doctors saw that Natalie's blood platelets were falling for no apparent reason. Doctors are a bit concerned. SO, PLEASE BE PRAYING THIS WEEK! We are going to have another blood test to see if the blood platelets (clogging part of the blood) count is rising falling or holding.
We want the count to rise but if the test doesn't reveal them risen 5x what they are currently, the Doctors are going to give Natalie a spinal tap later in the week. This test will verify if it's just a scare or if the cancer has returned. If the cancer has returned we'll need to start Natalie's treatment over from the beginning. Then there will be discussions of a bone marrow transplant (this is 50x more brutal than anything we went though already). I don't think my heart can handle bear that weight again.
However we are trying not to panic and keep calm. There are a lot of factors in our favor: First, Natalie's looked like she's had a cold (and her sister has one). This has the potential of knocking down her platelets. Second, they stopped all oral chemo and her platelets still fell...But one of the other Non-chemo meds Natalie's taking may (in some cases) lower platelets. This being the case we have stopped that med too. And for good measure, she looks so healthy and vibrant. None of her internal organs are swollen and all her other counts (hemoglobin, ANC immune system, red blood cells, etc) are at good levels.
So, we should just keep a cool head and see how things turn out:
- Pray for 5x the platelets
- That the doctors would feel confident about their decision
- All of us would have peace
Initially, I have a good feeling that she is doing fine, but it's just another one of those scary things! I really think this is God showing us that He's in control no matter what the outcome. We had a "word" this week that when it's impossible for mankind to work, He works. God has been so good to us and we can't forget that. He is faithful no matter what good or bad comes our way.
Thanks for all your prayers and thoughts.
The Orlando's
What a wonderful day!!! Dana & Dominick had a party for Nicole, Natalie's little sister, She turned 1 year old on July 3rd. Nicole & Natalie had a great time. They Laughed, smiled, played and just plain enjoyed themselves. Nicole shared her new toys with her big sister. Good job Nicole!!
Natalie is doing well right now. Seeing her laugh and giggle is such a blessing. She is eating good at this time and starting to put on a little weight. Keep praying for her to increase the variety of food that she will eat and to keep the effects of the medications at a minimum.
I just have to say Thank You to our Lord and Savior for special times like today. Thank you, Thank you, Thank you. (birthday photos)
It's been such a long time! Things have been so busy. A few weeks back we were actually hospitalized for nearly 2.5 weeks. Natalie is doing great and we're looking forward to starting summer school when she is up to it.
The real reason I'm writing is... we're excited to announce we've put an offer in on a little house of our own. Actually a condo, much like the one in the video. We are asking for prayer because the temptation to commit too much financially. We figure there's never a good time to spend 1-billion dollars (not really but it feels like it).
God has done a steller job navigating our family so far, so we thought, why kick Him off the job now?. We feel there are so many variables, we are asking God to go before us because He really knows us best.
The house will need a lot of work (especially to make it ready and super clean for Natalie) but we are willing and eager. We love the location. It is so central to a ton of the things we love to do. And of course, it is not 100% perfect, but we hope God says YES! but if not we know He's got something better for us -- maybe something on wheels?
THANKS FOR YOUR THOUGHTS AND PRAYERS :)