Thursday, December 17, 2009 3:31 PM, CST
I'm not sure how I am still functioning as well as I am after having a repeat night like the one we had last inpatient treatment. The Methylene blue wasn't able to stave off the neurological side effects of the Ifosfamide. Sicily repeated the same symptoms, but at least this time I was aware and very much on guard to handle what became reality again. It was rough. She does not understand, nor do we, why this is happening to her. It's scary, but Patrick and I continue to hold tight to the thought that this is what we need to do to eradicate the cancer.
We have a friend in the hospital who happened to be on call last night and it helps having him there to bounce ideas off of and help us when we feel in crisis. I told him that Patrick and I try to imagine that if this drug is causing such an effect on Sicily, that it hopefully is shaking up the cancer, as well. But he responded that they don't want to see this...what Sicily is experiencing is too much and we have to find a way to lesson the negative consequences of the Ifosfamide all the while hoping to still reap its benefits. It's a balancing act. One in which we will weigh heavily depending on the results of the scans scheduled for Jan. 4th.
We were able to talk with Dr. Hum this morning and she is keeping a close eye on Sicily. She is not ready to toss the Ifosfamide, yet, as it could prove to be helping to achieve our desired results, but we will definitely look at tweaking the dosage and timing if we decide to continue after the scan. Here, once again, is evidence in the need for us to take things one day at a time.
The date of January 4th is burned into my brain and it can't get here quick enough and at the same time I dread its approach. So, we handle what is happening in the here and now, and let that day have its turn when its turn arrives. There is much to celebrate and be happy about in the next couple of weeks. I'm ready for the kids to be out of school for Christmas break and for us to experience some extremely thick family bonding time! I'm ready for the magic and warmth that Christmas provides for my heart.
I confessed to Patrick the other day that I don't “feel” Christmas right now. I hate that! I close my eyes and search for that feeling I find every year at this time and it's not there. Maybe once we get Sicily home and she recovers from this episode I will find my Christmas. I guess my Christmas feeling has a lot to do with just having my husband and kiddos all home under the same roof and spending quality time together. I'm not unhappy at all. I'm really the opposite...I still feel like smiling and laughing and enjoying our life. I just want and need that Christmas feeling!
I'm sure one of these days perhaps even sooner I will crash emotionally again. If I feel the need to cry, I still open the dam and let the water flow. This morning it was very emotional having Valerie and Bett there to witness Sicily in this condition. I try very hard to protect her dignity even though a four year old has very little knowledge of what that may be, but it's hard to have to handle your thirty-nine pound four year old daughter like an infant. That is how I can describe Sicily when she is suffering from this side effect.
I have her in pull-ups, something she did away with long ago, but we are in need of using them right now. After carrying her to the bathroom when we were able to catch her before the pull-up practically exploded, I would carefully lay her on the kid sized hospital bed all the while trying to support her head as it would wobble back and forth. I would put on her pull up with no assistance from her legs as she struggled to know how to help me. She whimpers and moans in between full blown sorrowful cries. At one point as I was right by her she hysterically cried over and over with her eyes squeezed tightly shut for mommy...and I was right there. I couldn't get any closer to her if I tried.
I hated for Bett and Val to have to endure that pain with me, but at the same time, having them there helped me feel stronger! No one should ever have to observe a child in this condition. It is beyond heartbreaking. We asked for Sicily to get a dose of Benadryl through her IV as it helped her relax and sleep a long time yesterday when she was getting her transfusion. Before I left her room to head home after lunch, she was laying on daddy's chest peacefully sawing logs in the recliner. I hope she can stay that way for a long time today so she can sleep off some of the remaining chemo. She is still scheduled to get a dose of Etoposide today, but Dr. Hum wanted to evaluate her before making that call. Etoposide has never caused Sicily any problems, so personally I think it would be okay...but I will let Dr. Hum make that call!
Please pray for Sicily to bounce back from this very soon and that she stays well and fever free for the next couple of weeks. Pray for our other three children as they maneuver their way through our life circumstances. Elias brought both Patrick and I to tears, again, yesterday with his words. I was home when he barreled off the bus and he excitedly ran in and proceeded to empty out his backpack. Instead of carefully unhooking the clasp and reaching in to remove the contents, he holds the messenger bag upside down and shakes it until gravity releases and scatters papers all over the floor. He bends down and shuffles through the mess until he locates his articles of interest and proudly hands them to me. In my hands I hold two fronts of Christmas cards that have been separated from their back halves and I turn them over to find notes written in his cute second grade hand writing.
The first one I read went straight to my heart, which notified my brain that tears would soon be falling. “from: Elias To: mom and dad...I love you mom and dad. You deserve this you take care of me and feed me dress me and Love me and every thing else. and thank you for buying me toys. and thank you for my bed and every thing else.” The second card reads, “Happy new year mom and dad I Love you you are the best I can't wait to see your face on chistmas day I got you booth your presnts that I got from the pugrin (Penguin) shop. They are great I hope you Love them.” You can bet we will. He has already tried on several occasions to give us our presents early as he is so excited. His elementary school PTA set up a shop for the kids to purchase gifts that they call the Penguin Shop. I will treasure whatever his little heart picked out for me forever! Patrick told me to laminate these two cards and the next time I feel overly frustrated with his behavior, pull them out and remember how special this little guy is!
Isabella has been having some issues with her blood sugar being in the low range ever since she was sick last weekend. We have an appointment next Tuesday at the pediatric diabetic clinic so hopefully we can resolve the matter. I know she is in need of a break from school. I think she is starting to be aware of her stress levels and even voiced to her aunts that no one understands that her little sister has cancer and that she has diabetes and I think she is feeling overwhelmed. She still won't ask for much help from her teachers with school work and just brings it home assuming mom or dad will be able to help her. There are times we won't be able to. She is still somewhat timid and quite in her school surroundings, and I'm at a loss of how to help her with that. Maybe after the break, I will have a chance to contact some of her teachers. I know they would be more than willing to help. I just haven't felt like I have many moments to spare to handle more than what is going on during each day!
Speaking of Isabella, she and Corinthian just came home from school so I better go get my hugs!
Please continue the prayers. Please!