From Elaine's CaringBridge Site
Journal entry by Laura Roberts — 6/11/2015
I can not begin to tell you what a rollercoaster we have been on this week. It has been anything but fun. As I said in my update earlier this week Elaine is sick, sick, sick from these treatments. Even today, three days after her last treatment she is still sick from side effects of the chemo.
Sunday night we ended up in the Children's Hospital Emergency Room. Elaine was complaining about a stomach ache all day for explainable reasons but then as it got later in the day and the stomach ache should have been gone she still complained about it and said it hurt her to breathe. So, being freaked out, I called the after hours nurse and she recommended we go to the emergency room. Going to the ER was a miserable experience. I won't go into the details other than to say I will do everything in my power to try to avoid the ER going forward. I know they are good people in the ER and they do their best but they are human and the level of care was just not what it is in Clinic 8 where our oncologist is. We got to the ER Sunday night at 10:00 PM. We left Monday morning at 3:00 AM. They gave Elaine morphine in the ER which we now know makes her sick. A few hours after getting home from the ER we got up and went to Elaine's chemo treatment where they gave her fluids and got her back to feeling better. She feels better when we leave the clinic but it never lasts as long as you would like. We are trying some herbal remedies in addition to the anti nausea medicine we have. We will find the right combination.
This week was also our appointment with MD Anderson. We have had this appointment since we got Elaine's diagnosis. In fact we had the appointment at MD Anderson before we got the appointment at Children's. Friday, June 12th is our appointment at MDA. This entire week has been back and forth between do we go or do we not go mainly because of how sick Elaine has been from the chemo. We made several calls to MDA this week and learned that the appointment we had was with the wrong doctor. The doctor we had the appointment with sees adults and not children. When we tried to change the appointment we were told we would have to start over in the process which meant possibly another 4 weeks before we could get another appointment. That wasn't acceptable because by then Elaine would definitely not be able to travel. The next round of chemo will be tougher than this round. So we argued and argued about do we go or not go. It was not pretty. Even sweet Elaine was showing some of her Mom's red-headed temper. Finally after much anguish the decision was made to go even though we knew we had the wrong doctor because we just felt like being there we could get to the right person better than trusting MDA to give us an expedited appointment with the right doctor. So, decision made, my brother took the dogs to his house to take care of them while we were going to be gone. We move into fast gear to get ready to leave early AM Thursday morning with the supplies to be on the road for 10 hours with a sick Elaine.
Thursday morning we get the car packed and get Elaine in and settled and we are one our way. Our first stop is Children's Hospital as we have to get a couple of prescriptions to make sure we had enough meds to try to keep Elaine as comfortable as possible. Once there Brent goes in to get the prescriptions and I stay in the car with Elaine. When Brent comes back he is on the phone with MDA saying that the doctor that we have an appointment with does not treat children. (Keep in mind they choose the doctor. Also keep in mind that they ran my insurance and had her date of birth so her age should not have been a surprise.) We are told that they are going to cancel our appointment and that they will call us back when they have another appointment with a pediatric oncologist. So we are home and I ate an entire bag of cheese curls (not kidding) in about 20 minutes while I paced my kitchen and went through all of the emotions.
Since being home we have heard from MDA and what they are telling us sounds reasonable now. We are definitely talking to the right people now and the options they are offering seem to be more in line with what we were hoping for. I'll update more on this when we have a new appointment.
I've come full circle in my emotions. God is in control in all of this. He has a plan and is working it out. It was God that didn't let us get farther down the road than Children's before we had to turn around. Elaine is resting comfortably right now; better than in several days. All of this is becoming funny to me now.
To further see how awesome God is check this out. After getting home I picked up a Joyce Meyer devotional that I have called The Power of Being Thankful. June 11 says "Disappointment occurs when our plans are thwarted by something we have no control over. We can be disappointed by unpleasant circumstances or by people who let us down. When we are disappointed, our emotions initially sink, and then sometimes they flare up in anger. But, thank God, we don't have to be led by emotions. The next time you are disappointed, pay attention to the activity of your emotions, but instead of letting them take the lead, make the decision to manage them. There is nothing unusual or wrong about initial feelings of disappointment, but it is what we do from that point forward that makes all the difference in the world. With God on our side, even though we will experience disappointments in life, thankfully, we can always get 'reappointed'. Trusting that God has a good plan for us and that He orders our steps is the key to preventing disappointment from turning into despair." A man's mind plans his way, but the Lord directs his steps and makes them sure. Proverbs 16:9. That verse says it all!
As I was about to hit submit on this journal entry MDA called back and said they have an appointment for us at 9:00 AM in the morning. It is too late to drive so we are flying out tonight on a 2 hour direct flight from Birmingham. I had cancelled the hotel for tonight but was able to get it back. I was able to rent a car. God has it all worked out. I'm sure once Elaine is healed and this is all a distant memory this will be a funny story.
Rejoice and exult in hope; be steadfast and patient in suffering and tribulation; be constant in prayer. Romans 12:12.