Hello all,
To save us travel time the doctors have agreed to train us how to give some of the more frequent heavy chemo meds directly at home. Monday's typically start with a trip to Sanford for Natalie's weekly Spinal Tap. Medicines are injected (intrathecally) into her spine, and the fluid evaluated. This 15 minute procedure takes about 8hrs from leaving to returning home. By the time we leave the hospital Natalie's Port is "Accessed." This means there's a needle and tube present in her chest port for the delivery of medicines. Each week we have been trained at regular intervals to administer a mind-numbing number of medicines, one of which though her chest port. If you try to imagine, it's a fairly odd to suit up in protective gear and inject a bio hazardous substance into human being, let alone your daughter. But still you press on because as a parent you know it's her best chance at beating this disease.
Natalie is such a trooper. Don't get us wrong, she really doesn't like her treatments, but she handles them with courage; honestly better than Dana or I would. I am so proud of her. Her courage and strength is monumentally amazing to me. I continually grow more fond of her daily. Though this time has been immeasurably tough, I've truly treasured spending countless hours by her side. It has been such a treat to get to know her more completely (than I think I would have normally). I will always treasure all of the little moments like our little gibberish talks, having her fall asleep in my arms, and holding her hand at the bed side nearly all night.
Sometimes I feel like she is telling me that everything will be alright. I don't know how she does it but she has managed to touch so many lives with her amazing (I don't even know what you call it) it's like an aura. Something about her little spirit, people gravitate to her. I really feel she is being used by God in so many ways. It is truly amazing how someone so young can teach so much.
Your prayers are hard at work,
The Orlando's
We are working hard to get the house really clean for Natalie. Since Natalie is susceptible to mold and mildew we are repainting and re-carpeting the house. We are also installing two HEPA filters to recycle the air. Doctors say all of our work is a great precautionary measure to keep emergency hospital visits to a minimum, however the true risk is the bacteria already present in Natalie's body.
Doctors say we all have bacteria in our bodies but we don't get sick because of our strong immune systems. It is somewhat of a counter intuitive thought but to kill the Leukemia we have to kill all types of cells one of which protects against sickness. So to work to cure her we need to compromise here immune defense...
Since the test results returned that Natalie is now in the higher risk group we are still asking everyone to pray that she handles the drugs. We are entering a whole new round of intense Chemo. Many of these new drugs cause nausea, fevers (requiring hospitalization) and other things like extreme need for rest. Dana and I thank you for your continued uplifting prayer. And as we progress we will work to update the blog 1x-2x per week as things develop.
Don't forget this is cancer awareness month, we are not alone. There are thousands upon thousands of people suffering from this disease all over this country. Maybe this month we can turn our thoughts towards the sufferers and their families as the holidays approach. Just a thought.
We love you all,
The Orlando's
The Orlandos will be returning to Stanford this weekend for Natalie's next round of treatment. This will be hopefully only a weekend stay.
Since Natalie is going to have a new treatment schedule, please pray for the potential affects of the new medications. Also please pray for Natalie to respond to this medication.
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!