My precious family and friends:
Your love and prayers have sustained and upheld me in the longest hours and days I have ever lived! I finally sat down at the computer and read the updates and comments. As Loretta said, she has read some of your thoughts to me over the phone... often while I cried. I don't know if there are adequate words in the English language to describe to you the unbearable pain I have felt, and even now feel along with the sweet comfort and strength of our loving God. Even as I type, I cannot stop the tears from flowing. I was able to sleep for many long hours last night, and then stayed in bed reading for the rest of the day in an attempt to block out the images in my head and the thoughts of what Ellie is going through several blocks away from me. John's aunt Belinda (a fire fighter from Florida) flew in just after Melanie left to help us care for Ellie. John and "B" are taking turns with Ellie - with Loretta ever present on the phone, while I rest. They have made me feel completely at ease to be able to take all the time that I need, and quite honestly I don't know when I will be able to face going back into that room. Of course, I will go - but for now I rest knowing that Ellie is in capable and loving hands... and that in my present state I will be no help at all to my little girl. The time is coming when she will need me again, and I will be there.
Mom, Stan, Pat and Ginger are all back in Florida now. It was wonderful to have them all here, and while Ginger spent quite a bit of the time helping with the phone and record keeping in the room, the grandparents had to spend a lot of time just waiting. They would take turns coming in to see Ellie in her peaceful moments, but I was unable to bear the thought of them spending the kind of time in the room that we were. I was sorry enough for what Ginger had to see. I feel that their burden of all that they were feeling in loving Ellie the way that they do was enough to bear. (And to be quite honest, on the selfish side, I would have been unable to stay in a strong place during some of the "episodes" if I had to look up and see the pain in my heart mirrored on their faces.) While Melanie was here, we were able to leave Ellie in her care a couple of times and spend time all together over a meal. It was wonderful just to tell stories, catch each other up on details, and just laugh. And once I was able to take them on a tour of Sloan Kettering and have them meet some of the special people there.
Some of the days and nights have started blurring together, so I'm glad that you have been receiving updates along the way. I have memories of the past days that are both horrible and sweet. I spent many hours leaned over the bed at not quite a 45 degree angle, and even in that, God provided the strength when I needed it. I would often find out later that I had been in that position for 2-3 hours at a time. There were many times when Ellie was bent on communicating something to me and it would take a full inspection of her body only to find out that she wanted to turn on one side. Sometimes she would get so frustrated, that she'd start to cry. In the scariest and most upsetting moments, she was completely out of her mind - even to the point of pushing John or me away from her in fear - and once it took three grown women (the nurse, Ginger and me) to hold her down to keep her from ripping the tube out of her throat. Another time she was convinced that there were spiders everywhere. Sometimes she was calm and smiling - and she even made a joke. I came in the room to find her smiling at John, but when she saw me she put out her bottom lip. When I recognized it as her "egg custard face" (inside joke) she grinned - as best she could with a tube taped to the side of her mouth. During one of the most difficult times when I was trying to calm her down, I quoted her favorite Scripture verse: "God has not given us a spirit of fear, but of love, power, and a sound mind." I could see her lips moving as she tried to say it along with me. As she started becoming more frantic (I believe this was when she was seeing spiders) I repeated it probably 20 or more times in a row along with assuring her that what she was seeing wasn't real and that I would not allow that to happen to her. Yesterday, around the time when she was able to frame the words "I can't do this anymore" (after breathing at a rate of 50-80 respirations per minute for over 24 hours) I assured her that Jesus was with her every step of the way, and that he had been through suffering just like her. I prayed with her and made sure that she knew that He would not let her go. The hardest part for me has been staying almost exclusively in the mode where I can't allow her suffering sink in to the point of rendering me useless to her, so that I can get in her face and talk her down from the panic, fear, and pain - or inspire her to think, work and remain calm. The night before last I was completely spent. I realized that God had given me super-human strength and endurance, but in that moment it was just gone. I knew that God had not failed me, but that He had provided fresh strength in the form of Belinda. Even though I slept in the PICU that night, B was on duty and I could rest for a number of hours. That night I was awarded the one precious "mommy" moment of the whole experience. Ellie asked for me to be "with" her, so with the help of B and the nurse, I carefully dodged all of the tubes and wires and climbed into bed next to Ellie. While she rapidly breathed into the sealed "bi-pap" mask, I snuggled her as close as the tubes would allow. And for two precious hours I was just able to be Mommy. And in between spells of sitting up to cough, Ellie slept while her breathing began to slow. I slept some as well, but not before I looked up to see tears streaming down Belinda's face while she talked on the phone to Ellie's "Lala" (Loretta).
Where, may you ask were the drugs? Well, that has been the most difficult and complicated part of the whole process. (Not to mention another source of my exhaustion.) The delicate balance of keeping Ellie sedated enough and keeping her body going towards the goal of extubation (twice) was extremely tricky. Often while rather heavily sedated, Ellie would still manage to try her best to communicate. We were in constant communication with the medical personnel to determine what Ellie's mind, emotions, and body could take. My wish, as Ellie's mother, for her to remain comfortable is only superseded by my desire for her to remain alive! (As it has been for this entire 7 months.) Once she was no longer on the ventilator, she was not allowed to be too heavily sedated so that she could still breathe properly. (But there were still some meds on board to keep the pain from her chest tube at bay and keep her anxiety levels down.) There was also the problem of Ellie's blood pressure. While on the ventilator, during which time it is best to remain sedated, her BP was too low, and sedation drugs made it lower. Once off the ventilator, during which time she was not to be sedated, her BP went too high... and so it goes.
As I told you in an earlier entry, God has enabled me to be bold when I need to. It is still a rather foreign feeling to me, and has been dubbed as my “warrior mom” mode by Melanie. I’m still not really sure that it qualifies as bold to most people’s standards because John thinks it’s “cute” and no-one seems intimidated by it at all. I was telling Ginger that in my mind I have horns, and fangs, and even a sword… but she said that it’s true, but they’re pink and sparkly. Oh well, so much for the intimidation factor!
I have been thinking a lot about all of your prayers for us, and I know that the temptation must be there to wonder why He doesn't just step in and make it all better. I don't have a crystal clear answer to that - even for my own heart - other than to say that we have seen, heard and felt the results of your prayers in ways too numerous to count. I have had a very real impression from the beginning of this (Ellie's cancer) that God intends to use Ellie's life for His glory, and when all else is stripped away - that is the only thing in this life of ours that really matters, and it is the only real dream that I have for my children. I have known from the very start that this journey would be about suffering... no matter what the end result will be. With all the strength of a mother's love, I don't want my little girl to suffer - but with just as much certainty I know that this life is not the end. I know that unbelievable glory and joy will be Ellie's when she reaches the arms of her Savior whether that comes when she is 8 years old or 108. It is this knowledge that sometimes tears me up inside... when watching her suffer becomes too much to bear. When Ellie was re-intubated last night and we came back into the room to see her lying on the table paralyzed and unconscious, I must confess that I just wanted it to all end for her. I carefully applied Ellie's special ointment to her parched lips and any other visible wounds. I placed pillows under her knees, and made sure that "procedure bunny" was in her hand. I made sure that her skin was covered with a sheet just in case she was cold. I whispered in her ear that she had done well and worked so hard, that now she could rest, and that I love her. And then I walked away knowing that I had done my best and given my all to prepare her emotionally, mentally, physically, and spiritually for life or for death. I wondered if somehow God might answer her prayer and take her home in her sleep. And then I cried because I don't want to lose her.
My sweet girl made it through the night, with her daddy watching over her. Belinda and John are taking the night shift together and hopefully John can sleep some, since he has gone all night and all day with only a short power nap. I have spent the better part of the day crying... Even in this state I can see that God's grace is still enough. And that the greatest gift that He has given me to get through this situation was to send His son to this earth in the form of a man... and that He cried and was hungry... He felt loss and He suffered... that He KNOWS in the fullest sense of knowing how I feel, how John feels, and most importantly, how Ellie feels. As if saving my soul wasn't enough, He even cares for my earthly state and put Himself in my place as a vulnerable human being and willingly suffered and now identifies with my pain. He holds me while I weep... all the while whispering that He KNOWS. And with every fiber of my being I hope that in the shadowy places of Ellie's drugged mind right now, she can hear Him whisper the same... "I am here, and I KNOW."
As you pray for us, please picture us this way... and know that as we encircle our little Ellie, we can feel your arms around us continually.