Update from Dominick on Saturday:
Our first outpatient (out of the hospital) meeting was a bit hard to be mentally present for. The results of her final bone marrow count are back and unfortunately Natalie had some Leukemia cells still present, so she did not pass. This bone marrow scan "MRD SCAN" is a new tool on the cancer scene and is accurate within .001%. Previously the test only consisted of scanning for Leukemia cells with the naked eye. Natalie has so few cancer cells that she passed this "naked eye" test but then failed the MRD Scan.
Therefore, Natalie has been placed in the High-Risk/Slow Responder category even though she was considered an Early Responder after the previous count. However, because she has Down Syndrome and because of some extremely favorable research at St. Jude Children's Hospital, we all feel that this treatment plan will be significantly better for Natalie.
To expand a bit further, Natalie is participating in a national research study. The study has specific treatment plans for each individual depending on many factors (one being the MRD Scan). The Low and Medium-Risk categories each have about 4 treatments plans. What happens is a computer randomly picks one of those plans depending on the category that the patient is in, then they evaluate the data to see if the treatment works better or worse for the patient. If Natalie passed the MRD scan the computer could have chosen one of the less aggressive treatment plans for her. Now, considering some of her initial numbers and some favorable research at St. Jude Children's Hospital, all of us feel a more aggressive treatment plan is best though this means more side effects and possibly longer chemo treatments. We are trusting God with this outcome and have found some comfort in knowing that the most is being done for her and we will never have to wonder if we should have done more.
Even still, I felt overwhelmed yesterday with this prognosis. I immediately felt nauseous and almost passed out right in front of the doctors (not usual for me at all). Both Dana and I prayed last night for about an hour or so. I want you to know, it felt so good to simply lay in his lap and ask for His will not ours. We specifically asked God to sustain us for this coming year and to give us the spiritual strength of warriors. This is a hard time but we know that this is only a season in the big picture.
Thanks for your prayers of strength.
We love you all so very much!
The Orlando's
Everyone, Now that we are home, Dana and I wanted to write a note to express our overflowing appreciation we feel toward everyone who has been faithful during our recent battle with Leukemia. Words can't begin to mirror the gratitude we've felt over the last 36 days. Each of you has given of yourself to our struggle. We have been humbled by your love and incredible generosity.
Your thoughts and prayers has truly been the binding agent that's sustained us during this time. Though this battle is far from over, we beg you to keep praying for the welfare of our little girl. To date her treatment has thrown us a few curves, but let me encourage you that God is listening to your prayers! Dana and I know whatever the outcome God has secured the future of our family.
Your support has allowed us to face this reality not as two but as many -- for that we are exceedingly indebted. In the midst of this event know God is working. He has allowed us to share some of the darkest hours with a few other parents.
We're reminded that, believer or not, God has breathed life into some incredible people. Though this reality is not a desirable place to be, there is some great work to be done. And though it might sound odd we're thankful God has seen us fit to wrestle through this terrible disease.
From the bottom of our hearts we sincerely thank you for all of you're continued prayer and support. The strength we've seen exhibited through your love and prayer has truly allowed us to see daylight from the depths.
We love you all so very much!
Today is Day 29 of Natalie's treatment and the Orlando's stay at Stanford. It is hard to believe it has been a month now.
**Dom texted me and told me Natalie is having a surgical procedure today. He also indicated they expect to go home tonight!
Nothing yet on tests.
Update: 8:35pm
The Orlandos are home! They went home tonight for the first time in a month.
Natalie had a port placed today surgically so she can receive mediation directly. It resides under her skin and is sealed so she can take baths or swim. They have a follow up appointment this coming Friday, but for now things are as good as could be expected.
The results of the tests for her Leukemia cell levels will not come back for a week, so we will keep you posted as to the progress.
Dom's voice on the phone sounded alive and lifted.
They are so thankful for everyone's prayers and encouragement and financial gifts.
This is a great milestone to go home!
Here is an update.
Natalie's tests have come back negative meaning that she doesn't have a bug. This is good news.
they are currently in a private room until the need arises for them to share or move to another room. There was a possibity that they could have gone home this week, but due to Natalie still having Diarrhea, they will wait till next week. They actually may get to go home on Monday!
Day 29 is Monday and when they will perform a final bone marrow (MRD) scan test. It will take a week to get results.
If she is below 5% she is early responder, if not then she is high risk. We are hoping for less than 1%.
They are also giving Natalie a port so she will have a surgical procedure on Monday as well.
But the best news is the potential for them to come home Monday or Tuesday.
Dom notified me this weekend that the doctors think Natalie may have contracted a bug of some sort in here GI tract.
This resulted in them being quarentined to an isolation room. Dom and Dana now have to where smocks and rubber gloves etc. If you have ever seen the TV show, House MD, you can imagine it.
Hopefully, Natalie will be ok and the tests will come back negative for any "bug."
If she has contracted a bug, they will be in isolation (to protect other patients) for awhile.
Please pray for them. It is just one thing after another. A real rollercoaster for the emotions.