Big long update on our time at St Judes and surprising good results

As usual, Valerie Grace had a great time at St Jude. We flew in on Thursday and my dad was there to meet us at the airport in Memphis (he flew in from Charlotte using his frequent flier miles). We took the shuttle to the short term housing at St Jude. Friday morning my dad drove us to an outside clinic appointment with Dr Pivnik to talk about the possibility of there being a genetic link to Valerie's tumor. Valerie's tumor type is almost always diagnosed in very young children. I commented on how many of the children with this type of tumor have a similar look to me. The doctor is interested in looking at the possibility of a genetic cause. They did lots of measurements on Valerie (especially on her face). She then pointed out the shortened last nuckle on Valerie's fingers...but took a look at my dad's hands and saw where that came from :) She ordered some blood work, an echo cardiogram and a renal ultrasound (all of which we had done during our stay in Memphis). The rest of the weekend was filled with eating at the cafeteria, visiting with Craig's two grandmothers (both over 90 years old and doing well). I could have visited them for days - what a treasure to be able to hear Dorothy's stories. Her brother was paralized in an accident when she was little. She told me how her parents were told that there was a great facility that could take him. Her father said no, that he was their son and would stay with them. It was such an encouragement to hear her words to me - she said so many nice things, it was like a big hug from the Lord.

We also visited the children's museum in Memphis (which was fun) and the zoo (which was not very enjoyable for anyone because it was so cold). 

Monday morning, Valerie had her eye appointment (they thought her vision looked stable), her hearing (which was great), and her occupational therapy appointment (they said she is right on track for where she should be now). Between appointments, St Jude had a winter wonderland party. Valerie enjoyed making necklaces and snowflakes. We were able to eat lunch with one of Valerie's favorite nurses. 


I tried keeping Valerie up late Monday night because she wouldn't be able to eat Tuesday before the MRI. She went to sleep around 8pm. 


I normally go into Valerie's scans thinking that I am going to see really good results - she is always so happy and doing well - unless I notice a symptom (like vomiting or vision changes) I just expect the results to be good (odd after many bad reports). This time around I just honestly expected an "unimproved" MRI report (and was bracing myself for a "worsened" report). I know there are lots of Christians out there that believe you must claim it - you must believe it will happen....well, I have been there. I haven't been believing that I could manipulate God into healing Valerie....I just really expected to see good things on that picture of my little girls brain, and yet being there the next day measuring the scans, trying to find one dimension that measured smaller than on the previous scan. The fact that Valerie continued to have hiccups didn't help. Each time she would start hiccuping it was like this big reminder that despite her happy, energetic exterior, there was a growing mass in her brain. 


I spent most of Monday night up talking to God - I tend to second guess things a lot and with the last MRI, I was really second guessing whether or not doing the radiation was the right thing (I have been second guessing it since before we started). When we asked to do a chemo combo a year ago, a doctor from another hospital laughed at the fact that we would choose that chemo. Thankfully, we have a wonderful doctor at Shands who has been open to newer things. We did that chemo 2 months and then switched to the radiation. Now, that chemo is being recommended by several hospitals for tumors like Valerie's. So, I kept second guessing the radiation and was thinking that maybe we should have moved back to the US and stayed on that chemo longer. As I cried out to God that night, this huge peace filled me, my fear and doubt turned into worship and praise - He brought me to a place of no regrets, of trust in Him (not for good results, but just trust in who He is and that He loves us). He brought me to a place of total trust in Craig as well as the spiritual leader, provider and protector of our family. I spent time on my knees with my hands on Valerie, praying for her. It is so freeing to know 100% that it is out of our hands and that I can fully trust the Lord to lead us. 


Valerie Grace woke up around 2am - she asked for food knowing it would be her last chance to eat until after the scan. Around 7am, we took the shuttle to the hospital (since it was raining). Valerie was scheduled to have an IV put in and labs drawn. I asked that the nurse who successfully put in the IV last time to come and do it this time as well. Within minutes she was down and Valerie Grace was screaming. It was difficult to see her so upset, but the one time she stopped crying was when the put in the IV - the band they put around her arm and the stuff they wrap it up in to keep her from pulling it out were the worst parts for her (she does not like gooey or sticky things). We then went down to radiation oncology for her follow up appointment. She was quite upset until she saw the doctor. She looked at him and said "we have been looking all over for you". Next we went to get the echo cardiogram (more sticky and gooey stuff), but she did well after a few minutes. She then went back for her scan and was able to see one of her "boys". She fell asleep waiting for the scan, but then she woke up when we carried her into the MRI room. I held her as she went to sleep and then left the room. I went to the cafeteria to load up on grapes and snacks to have for when she woke up. Around 4pm she woke up to familiar faces (the recovery nurses she knows well). We then went down to see Dr Kun to find out how the scan looked. So there I am, all ready, all prepared to hear bad news - and yet we are told that the tumor shunk about 1/2 a centemeter in each direction. Normally I have questions to ask and want to see the scan - but I was feeling so blessed to hear positive news that I didn't remember to ask any of my questions. Dr Kun added that he felt that we would be fine to go back to Ecuador late February. Valerie will go in for another scan the week of February 8th. The MRI report stated that the most of the cysts are the same size and one is slightly smaller. There are still some blood areas in the cysts. The report shows the tumor was 5cm x 4cm x 4.3 cm in September. It is now 4.5cm x 3.5cm x 4.2cm. The doctor sounded encouraged and surprised at how quickly Valerie's results improved after the scan late September. Valerie had her tumor shrink some the summer of 2006 and she gained some weight. She put on 4lbs in the past 3 months, which may be explained by the tumor shrinking again. 


We were very excited about receiving a good report, and honestly, I was really thankful that the Lord was able to show me what He did before we got the good results. Our night wasn't over though (despite how tired I was after being up with Valerie for her 2am snacking). Valerie started complaining about her eye once we got back to our room. She couldn't open it and when I looked at it, it was very red. We called the hospital and they told us to come in to have her seen. They put us in a room and let us know that it might be a while because of an emergency in the other room. People kept appologizing to us for the wait and I kept thinking how thankful I was that they were giving full attention the child next door who was not doing well. Holding Valerie on the bed, I prayed for the family in the room beside us. Valerie fell asleep in my arms. The child beside us was transfered to the ICU. They let me know they were planning to give Valerie morphine, but I told them about her reaction to morphine. We gave her motrin instead and they told me that they wanted to put drops in her eyes and put dye in to look for scratches or foreign objects. I remember having that done several times and warned them that she would most likely freak out (she despises eye drops). The doctor was a "boy" and I think that helped a lot. She laid so still and he did not touch her at all, he dripped saline from a syringe over her, let it drip over the dye strip (that they normally put right on your eye) and then the now dyed saline dripped into the corner of her eye. He told her to blink and in went the dye. Many doctors hold the child down and pull their eye lids open. This doctor was amazingly gentle and it paid off big time. Valerie then opened her eye and let him look in. Everything looked fine and her eye started to feel better (I am thinking maybe all the drops flushed something out). We went back to the room and ordered a pizza and went to bed. 


Wednesday, we met with endocrinology. Her thyroid levels and cortisol were lower than before, but still in the normal range. We then went for her renal ultrasound (more sticky gooey stuff). After that, we had just enough time to go back to the room and pack up before our shuttle came to take us to the airport. We had a smooth flight back and Craig and the girls met us in Orlando.

Thank you for praying for us and for Valerie. Thank you to the children in Valerie's kindergarten class in Ecuador who prayed for her and mailed her such beautiful cards - and thank you to Beth, her teacher, for sharing with the class about how Valerie is doing. There is something so special about children praying for children. 


Valerie Grace is already looking forward to her next visit at St Jude. They do a great job of making it fun for children (seeing that Valerie went all day without food, and didn't once complain is a testimony to the fact). We saw many familiar faces, families getting ready to go home after successful treatment, cancer free. We saw families back for check ups. At the same time, it was difficult to know that we would not be seeing some faces of children that we have been praying for (3 that went through radiation with Valerie Grace). It is a reminder to hug our children, and appreciate them each day they are here. Time is precious and we can't do over today. Children are a gift from the Lord - take time today to let each of your children know how special they are to you and to God. 


Love,
Celeste




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