Young Faith

It's been some time since I've updated this site to what it was initially intended for, Olivia's conditions. That being said, there is much to be said.

Olivia, since her hospital stay for the month of June, had been on TPN at home. To administer this to her would require her port to be accessed and TPN (or her "nutrition") to be administered nightly over a 12 hour period.  Initially she was on it for every single day of the week, for the full 12 hours and then after several weeks she was weened down to 10 hours a night. The doctors found this therapy to be necessary because of her troubled pancreas (from the severe pancreatitis that had put her into multiple system failure.) Because they couldn't get a clear view of her pancreas on any of the scans the initial thought was that she only had 30% of her pancreas left. They feared that any fat intake would cause her pancreas to secrete the enzymes it uses to break down the fats, and put stress on the organ. Any stress meant possible formation of cysts and so to avoid that she was put on a very restrictive diet of zero to very low fat. (I took it upon myself to really do all I could for this and only allow 10g of fat per day. It actually wasn't too difficult.) 

In September she went in for an updated CT-Scan to see what exactly her pancreas was doing. They found two cysts that had formed on the tail end of her pancreas. They are both spherical in shape with the larger of the two being just under 5 cm in diameter and the smaller being half that size. It wasn't all that unexpected considering the severe pancreatitis that she battled. At this point, we were just to watch the cysts to see what they did. Also, we learned that the whole "30% left" wasn't very accurate. Her organs in the abdomen were so messed up from the pancreatitis the scan couldn't give the doctors a clear enough picture to know exactly how much was or wasn't left. It seemed that enough was left to be functioning just fine.  All they could see is what appeared to be the head of the pancreas(which you need) and then a large empty space followed by a jumbled mess and cysts where the tail is supposed to be. Whether the tail is there is unknown. In Livi's case we are hoping that the tail is no longer there. If it is there, as enzymes are secreted from the tail, the cysts will grow larger. If the tail is gone, the cysts don't have any more dead tissue to fill with, and they will remain the same size.   Around this same time we were given the go ahead to relax Livi's diet restrictions and lessen her TPN to a mere 3 nights a week! This was great news! Better than anything we could have hoped for. With TPN only for 3 nights she would be able to be "needle free" for 4 days! That meant 4 days of taking baths instead of having to tape up and take a quick shower in fear of her needle/port site getting wet. 

By now we were self sufficient as far as her home health care was concerned. Back in August I had been given the go ahead to start accessing Olivia with her needle and had been doing so ever since (even at the doctor's office, she prefers me so the nurses hold her while I do it). We also had to draw blood for labs once a week which Livi enjoys helping with. The port is so nice to have, a real blessing of modern medicine. It is connected to a central line so we can take blood right from her line while she's accessed  During the day while she's not hooked up to her TPN, her line would simply hang by her side. (You could always see it hanging out of her shirt on the bottom, but it never bothered her. It was hard though,  around other kids who didn't know it was attached!)

We were very grateful as well for the diet restrictions being lifted. The GI said that he knew me well enough to trust that our diets were healthy; and he felt comfortable letting Livi eat whatever we ate!

So, that's what we've been doing since September. Livi has continued with treatment and finished her Delayed Intensification stage without a glitch. (DI is said to be the roughest phase of the treatment plan. It's 6 weeks long with 2 weeks of chemo 4 out of the 7 days of the week! She sailed right on through. None of us have any doubt that Livi was given a little leg up by all the TPN. She didn't lose weight, like a lot of the kids do in this phase and she never missed a treatment by low blood counts which is not as common as missing. She has stayed right on track! 

Through all the good, she has had a recurring issue of left shoulder/chest pain. She would be doing nothing of note and all of a sudden would grab at the left side of her chest and start gasping for air. My thoughts went immediately to heart attacks! We had her heart ultra sounded by a pediatric cardiologist and found nothing. He assured us it wasn't her heart, but the pain continued. Nobody could tell us what was going on. My sister had read in her nursing school books about differed pain of the pancreas can radiate to the left shoulder, but the doctors said it's in the back of the shoulder not the front. We were starting to feel very frustrated as to what the problem could be. Livi was being woken up in the middle of the night from this pain. Our minds were preparing us for the worst...had the cancer come back? Our fears would be laid to rest with a visit to her GI doctor in mid October.

The racquetball sized cyst and it's sneaky little partner had been pushing up into Olivia's stomach which in turn pushed up on her diaphragm which then triggered her frentic nerve to fire up into the front of her left shoulder! At least we finally had an answer as to why all the pain. Now came the bad news, surgery. If the cysts were causing this pain, they needed to be dealt with. Over the next few weeks I consulted with all the doctors I could as to what they thought the best approach to the situation would be. All of them were wanting the least invasive route for Olivia, but they also knew the issue needed to be dealt. They could not see a clear way around surgery. We were going to schedule it for an upcoming week that Bill could be home (pancreatic surgery is a week's recovery in the hospital). Bill was told that day that he'd be leaving on assignment for the planned week of surgery. We digressed and prayed that something would work out. The cysts were too large and causing problems. They weren't going to shrink on their own. The option of a surgery, connecting the cysts to the stomach to create a natural drain, was imminent. We were heartbroken. Our baby girl needed a break. I did not want to put her back in the hospital. 

Saturday, November 1st came. A young man in the deacon's quorum of our church called and said that their group of 12 and 13 year old young men would like to fast for Olivia on the following day, fast Sunday. "Is there anything specific that is coming up that we could fast for, for her?" was his inquiry. I started to cry. The consult for scheduling the surgery was that coming Wednesday. I told him of the surgery consult and expressed my concern of not wanting her to have to have this surgery. If they would like to join me in my fast for this purpose I would greatly appreciate it. 

Wednesday was the 5th and the day we had been waiting for. Olivia and I sat down with the surgeon who started laying everything out. After we had discussed all the options and why surgery was the best one I said, "In all honesty, she hasn't been having the pain lately. I don't know if you're a woman of faith, but..." I left it at that. She was surprised and said, "Well, if she's not having any of the pain, I don't see any reason right now to do this surgery. I'll get in touch with her GI doctor, tell him what I think, see about getting her off the TPN and letting this little girl eat whatever she wants. No restrictions." I could not believe what my ears were hearing. Nor will I ever forget it. To say that I was elated doesn't even begin to describe the joy and gratitude I felt that day. The next day our medical supplies were picked up from our home. We no longer had a medical supply room in our laundry room!

The next Sunday at church I was able to share this experience with the boys in the deacon's quorum. Mine were not the only eyes filled with tears at the realization of God's hand in this little girl's life. These boys had been able to participate in something miraculous. I knew that all would be okay, and that through our faith things would work out; I am so grateful that these young men were able to experience a portion of the miracles we have seen these last 6 months in our home. When I left their classroom, a counselor in the bishopric, and friend, pulled me aside and confessed. He said that when the young men had told him what they wanted to fast for he had doubt. He wondered if they could fast for something a bit...easier, peace and comfort, perhaps. When he learned of the outcome he was humbled.

I am "amazed at the love Jesus offers me".  That my pleas, along with those from the young men, and others who constantly keep my daughter in their prayers, fall upon such a merciful and loving heart. I marvel that God loves each of his children so very much and that if we but turn to Him in prayer our burdens will become light.

Olivia is doing great and loving the opportunities to have chicken nuggets or Taco Bell burritos if she has the urge. She is officially into maintenance, her last phase of chemotherapy and while it will last for 2 years, we can't believe we made it! 7 months and we're here, and still going strong!