So Overwhelmed! Wednesday April 4, 2007

Once again I started this post on Wednesday morning and now I'm finally getting a chance to finish it. I have a lot to say about Tuesday, and even more to say about Wednesday and today! This will be a long one - if and when I get it finished! I'm not promising to reread or proof this one either, so if you find mistakes forgive me. Mom, when you read this, try not to cringe at the errors. =)

WOW!!! We are so overwhelmed. Overwhelmed by our experience last night (Tuesday), and overwhelmed by your thoughts and prayers. Let me start by saying that we definitely felt all of the prayers last night. Soon after Jack and his wife Peggy, walked into our hotel room, before we said 10 words, he said "I feel God's presence in this room." He said it so nonchalantly, that it almost took my breath away; Marc and I both started crying, and I don't think the tears ever stopped as I held Sophie on my lap, and prayed. Jack and Peggy placed their hands on her and prayed and prayed, quoting scripture so beautifully. His wife was talking in tongues and saying, "Praise you God." I remembered crying when Sophie was baptized 3 and 1/2 years ago, and the same tears came back. They were not tears of sadness, or even tears of joy, but more like tears of relief. All along I've said I've placed this in God's hands, but at that moment, I really felt myself hand this all over to God. Jack prayed for "complete and total healing," and said that he felt we would be granted this miracle, and that many of the people in his prayer circles (who have witnessed his work, and prayed with him) have gotten the same feeling. One person even described a vision he had, where God placed a "bone marrow" in Sophie's head and cured her! So, we are more than hopeful than ever; in fact we have been going back through the events of the past months and noticing all the "coincidences" that have taken place and really realizing just how evident God's presence is and has been through all of this.

Now, I must go back and tell you the events leading up to our trip to Nashville. Tuesdays are our "assessment triage day." This is when Sophie gets her weight, height, temperature and blood pressure checked. She also has her blood drawn from her port for her CBC and other blood count checks. We were dealing with the usual amount of anxiety but when the nurse checked Sophie’s temperature it was high - around 99.5. The nurse decided to go ahead with the other assessments and then take her temp again from her other arm. Sophie was fighting the blood draws, and her blood pressure was high from the anxiety. When the nurse took her temp the second time, it was 101. She then made the call to the "clinic" where Sophie's doctors are. By this time, we were late for our radiation; we were being paged at the same time to head to two different places. After meeting with the E Clinic nurse, and a confirmed temp of 102, we gave Sophie a dose of Tylenol and were told to wait and see if the temp came down. We knew that if the temp didn't come down, we wouldn't be able to do our radiation treatment because she cannot be sedated with a fever. So, while we waited, more blood was drawn for a culture to make sure there was no infection in her port, and we tried to get a urine sample. We had no luck with the urine sample because Sophie had just gone potty, and had nothing left in her because she was not able to drink since 8:00am and it was now going on 12:30. She was hungry, cold, tired, thirsty, feverish and grumpy. An hour after taking the Tylenol her temp was rechecked, but it was not coming down, so they gave us the dreaded news - no radiation. We were bummed because we knew this sets us back a day in our treatment, but Sophie was happy because they told us to go and get something to eat and drink so that we could try again for the urine sample.

Sophie started eating her lunch in the cafeteria, and then we heard a page for us to come back to the E clinic. So we packed her lunch up in the wagon and headed back down the hall. There they decided to give Sophie an IV dose of an antibiotic to fight any possible infection; she sat in the wagon and ate while she had the 20 minute IV infusion. Now time was ticking and we were getting a little nervous because we wanted to be on the road to Nashville no later than 2:00. The IV was to be done at 1:30, but we still needed the urine sample and then time to wait for preliminary results. After pumping Sophie with Sprite and water, she decided she did have to go to the bathroom; we were able to get the sample. Now we waited for the results. The nurse paged us around 1:45 and told us that Sophie’s urine had blood, bacteria and white blood cells in it. We were given a prescription for an oral antibiotic, Tylenol, and a thermometer since it worried the doctor that we were headed to Nashville and would be far away from St. Jude's throughout the night. We left for Nashville around 2:45.

The ride was long but uneventful, except when I looked over at Sophie at 6:00, and she seemed feverish. I took her temp and it was 103. We gave her another dose of Tylenol and antibiotic. At this point, I was begging, "Please God, no more...we are reaching our limit!"

I already wrote about our awesome experience with Jack and his wife Peggy. We decided we should try and get some sleep. Of course Nashville was getting hit with major thunderstorms, complete with hail and lightening, (a sign from God?) so sleeping was hard. I lay next to Sophie and prayed and prayed, crying for my poor little baby who has had to deal with so much. Her night was a little rough; she had quite a few night terrors where she woke up screaming and saying crazy things. We made our routine trips to the bathroom and had our midnight snack. I checked her temp at 1:00am and it was below normal!

Morning came really soon and we headed back to Memphis. You could tell Sophie was feeling better because she began asking if we were there yet just 20 minutes into the drive. I continued to check her temp periodically because I wanted to know if we should give her Tylenol. We didn't want to get back to St. Jude and find out she had a fever, and miss another treatment. The whole time her temp was around 98 degrees. We were so thankful!

Once back at St. Jude we headed to assessment triage. Sophie was the calmest she has EVER been. Her anxiety level was much lower, she gave another urine sample, and had her temp and blood pressure checked. Her blood pressure was the lowest it has been since we came. She was doing amazingly well. We headed to her radiation, where she was a little more anxious about the whole, "lifting of the shirt," but still better than usual. After radiation, we got the results of her latest urine sample, and the doctor said there was a lot of improvement since Tuesday. He was sure that it was the IV dose, so he wanted to give her one more. Again, we were in a rush; this time because we were scheduled to meet with a Make-A-Wish representative (a bittersweet opportunity that Sophie is eligible for.)

After all that, we came back to the apartment, and Grandma tells us that little Sarah has been unusually grumpy. Now, Sarah has always been pretty high maintenance, so we knew it must be bad for Grandma and Grandpa (who are used to being wrapped around her little finger) to tell us this. We decided she felt warm, took her temp and it was 101. We looked for our list of urgent care centers in the area, called and got the directions to one, and Marc and Grandma headed out with Sarah at 6:30. After a blood test, a urine test, a dose of Tylenol, and Motrin, and a near death experience (there was a PARKED car in the center lane of the expressway on the way back from the hospital that Marc didn't see until he quickly approached it at 65mph and had to swerve to avoid) the 3 weary travelers arrived back at the apartment around 10:00pm with the diagnosis of "a virus." We could sure use prayers for Sarah so that she gets well, and so that Sophie doesn't come down with the same thing. Pray for NO MORE SETBACKS!

Anyway...Sarah hasn't had a fever since this morning; she's been crabby and clingy, but sleeping a lot too. We are hopeful that she is on the up side.

I went to bed last night a little weepy. Reflecting on the events of the last few days really moves me. I still get teary eyed each night as I lay down next to Sophie. I just want to hug her so tight and promise her that everything will be okay. I was listening to a song by Jennifer Stanley entitled "The Person Who Loves You the Most" and the lyrics are about the strength of a mother's love (which all of you mothers, and most of us as children -hopefully- can relate to), only to go on and say,

"But there's One who loves you, greater than you've known,Heaven's arms reach out to hold you close,Cause God loves you more than the person who loves you the most"

Wow, I know how much I love Sophie and how I would do anything for her, but to realize there is a God who is capable of a love even greater than the love I have for Sophie is beyond comprehension. I needed that reminder.

Sophie's day today was her best yet. She walked into St. Jude instead of having me carry her. I don't think she has ever done this. We brought a bag of Easter cookies to deliver to each person who helped us during our appointments, and Sophie liked that. She was great in OT and PT, laughing and smiling, and even trying to jump with two feet. Both therapists stated that they are seeing an improvement in her fine and gross motor skills and strength. After leaving her therapy appointments, Sophie was willing to walk down the hall for her radiation treatment and appointment with her radiologist. We were so impressed. Dr. Krasin commented that Sophie’s face was losing a tiny amount of the puffiness (I don't see it, but I'll believe him!) and that she looked good. After his assessment, he decided to reduce the steroid another 1/2 mg, so we are down to 1 and 1/2 a day. If Sophie continues to show no new symptoms, and her current symptoms remain stable, he is hoping that we will be close to being down to a very minimal dose (if any at all) by the time we head home. We're keeping our fingers crossed and our hands folded!

Sophie was much better in sedation. Not as anxious, and her blood pressure was lower that usual. I was proud of her. She came home and told Grandma, "I did a great job at 3 of my appointments. I didn't cry, except for at the fourth one when I just whined a little!"

She maintained her good spirits the rest of the day. Came home, ate her lunch, and had fun playing. She opened her packages, and wanted to try each thing out. She agreed to go on a stroller ride with Grandma and Grandpa while I tried to shake my headache, and Sarah slept and Marc read his "natural remedies" book. They said she was laughing and fooling around in usual Sophie style all the way down and back even though it was cold and windy.

She ate dinner, and then gave me her usual sigh, which has come to mean, "I'm tired and ready for bed." I gave her last doses of medicine in bed, as well as the much anticipated treat, and then came back out to refill her water. When I got to the door, I could hear her singing and making up her own songs. What a beautiful sound to hear. I had forgotten what that sounded like. When she finished, I walked in and told her I liked her song, and asked if she had taken a bow. She didn't lift her head, but said in a matter-of-fact tone, "I'm laying down Mommy, I can't bow." She was her usual Sophie self and it made me smile.

I just can't believe the changes I have seen in Sophie the last couple of days. We are so thankful, and we hope there are more positive things to come. Marc has been doing a ton of reading about homeopathic remedies, as well as natural ones. We are trying to get everything ordered and lined up so that our routine is set to begin as soon as we get back home. We are all counting the down the days.

Thank you again, for your thoughts and prayers. We are so blessed to have so many people willing to help us in so many ways. We are thankful that we are able to witness the work of God through so many of you. Please keep the faith and feel the presence of the Lord as we do during this Holy Week.