Tonight I lay beside Natalie - keeping her company as she drifts off to sleep. Her little hands move about me - a reassurance that I am still there, since it is dark and she cannot see me. I have been wondering why, encroaching upon the end of this intensive phase of chemo, I have been so nervous, afraid somehow of the end. Then it hits me - I have been holding my breath... waiting for these final weeks of this phase. Some how "maintenance" (the easier phase of chemo ahead) being "the light at the end of the tunnel." But as I see the end coming I realize, it is not the end. There is still so long and far ahead. Even after two years of this next "maintenance phase" we will have 5 years of remission before she is declared healed. I just don't know if I can "hold my breath" that long. God, how do I "breath"throughout this next phase of chemo? How do I learn to live as if I am not bracing myself for great challenges, always on guard for the possibilities of what can go wrong? How does our family get through these next many years without fear of cancer? God, you are our peace, our hope, our comfort, our shield... we need you to get though every "today"
As I lay there next to Natalie, crying as I grieve the consequences of cancer, I feel small. Instead if felling like her mom or the adult, I feel small - just like her. Almost like I was just her little friend and I was spending the night with her. I felt like a little girl crying out to God. It was strange - I don't think I've ever felt that way before crying out to Him, yet somehow it was familiar. It reminded me that I am still His child. I am not expected to know everything or be everything (in other words be God). I am His little girl and He loves me. I then spoke out loud and told Him how much I love this little girl (Natalie) He put in my life.
I had memories of seeing her for the first time in the operating room (above) as they brought her to me all bundled up. I could only see her little face. And then, flashing over her life to this night laying beside her, I realized how much she is a little extension of who I am... and that is why we are so attached- that I love her so. And then I realized that WE are all extension of God... created in His image. And that is why He loves us.
Dominick had to take her back to Stanford on Friday. It was long day (8AM to 9PM) Natalie and her Dad were getting another Chemo treatment. This time she again got medication that caused a severe skin reaction, she cried for a few long hours and her face and eyes became very red. The Chemo she received required that she be extremely hydrated so after 4 hours of fluids, Natalie's eyes became really puffy. Her mouth sores and other symptoms have mostly subsided but this new medicine threatens the same. We ask you to continue praying for the next two weeks as this represents the last of the really heavy treatments. - Ruth O.
These next two weeks are going to be hard as we may travel to Stanford 2-3 times to receive blood transfusions in addition to our regular weekly visits. We are continually amazed how situations are presenting themselves in many of the people we meet. Just yesterday we chatted to a three people about God (some believers and some not) and shared how God has been the center of comfort though this time. I really believe because of your prayers, we are truly seeing the movement of God's hand in many of the people we meet. Praise God for Yu'All (that was for our southerners readers! :) - Dominick O.
This is Nicole's "Your not going to give me what I want?" face. I confess, it works pretty much every time!
Well we recently we were informed that there have been some ladies who have been making blankets in Natalie's name. They have initially made 11 blankets and plan on donating them in Natalie's name at Stanford's Children's Hospital. We are continually amazed how people are joining arms (in this case fabric) to support us in our fight.
Please continue to pray for us as we are in the middle of heavy chemo drugs. Natalie recently had to head to the ER because of a bout of diarrhea (causing dehydration). She spends most of her days crying and whining because she is so uncomfortable. We have to just hold on till Thursday (maybe a few days after) till we can stop administering this horrible drug Dexamethasone.
Working to make the best of our hospital visit we pretended we were heading out on a picnic. Complete with Sandwiches, oranges and pickles we had a wonderful lunch and a great little nap (all in the comfort of an isolated contaminant free room at our local hospital. When we look ahead to how far we have come we are in awe. It is a daily prayer fight and our support staff is truly amazing. If you are reading this you are part of the fight too. Thank you so much for your prayers. They truly mean the world to us.
The Orlando's
My Mom Wrote this morning:
Yesterday was the most challenging day, since Natalie has been home. The steroids she is taking every day this week are causing her blood sugar to rise. She is constantly upset and restlessness. Wednesday she will be given another medication that will intensify her frustration even more (so please pray for that). We've all felt your prayer cover from moment to moment; God's indescribable peace lifted our spirits.
At one point in the day Natalie's annoyance was dramatically, exhausting. I just cried out loud "Jesus give us some peace" and Natalie just laughed right out loud, then snuggled into my arms and drifted off to sleep. In my helplessness, I had called out and God showed up. Thankfully I'm on familiar terms with God showing up… at that point I knew He would get us through this. I can't say it enough. God is good!
-Ruth
Today went well. No surprises. It is always hard when we start a new treatment phase. Learning all of the meds and all the pecularities that sometimes follow the adiministration. Natalie is on a few new drugs this round and some older ones have come back. The most notorious return is Dexamethasone (steroids). This is the drug that will cause the remainder of her hair to fall out amoung other things like intense hunger and irritability.
Last time she took the steroid she had a few issues. One, her Blood sugar shot through the roof. There was one time that the machine didn't even register it was so high. That was scary. Though it is better to be higher than lower, it was concerning when we had to give insuline injections every few hours. The second was her intense irritability and hunger. If we fed her constantly she would have been in a tough predicament. So we ended up feeding her 2-3 cheerios every 3-5 seconds. We have a week on with this drug and a week off before we jump back on for the last remaining week, so we are hoping that things don't get too out of control (which might put us in the hospital).
Both Dana and I have been so thankful for all of your prayers. I know this is a cancer battle but I really believe that a large portion of this fight is spiritual. I see it as all of us going to battle together. We are fighting to win this battle physically yes but Spiritually too. This Spiritual battle is raging all the time and we have truly seen the fruits of all of your prayers. Incidences have happened too numerous where Natalie began getting sick and it just went away. All to say Glory to our good God. And bless all of you for your faithfulness, our debt to you is great and our appreciation is even greater. Love you all - The Orlando's
P.S. The next two months things will slow down considerably for us. Most of Nat's treatments will be home and Stanford trips will be held to a minimum. Please, please, please pray as we may be making some significant judgment calls to the med schedule (due to her last seizure). We think Natalie's body my be reaching a very low point with all the unrelenting treatments. It's in sight - 2 months will be here before we know it... (that will be a glorious day!)