New York City, here we come!
Thank you all for your sweet comments about the pictures. We have had a very busy couple of days. Ellie's blood counts are going down, so tomorrow she should be getting blood transfusions. The hearing test on Monday was very thorough. Ellie's right ear is better than her left. There is speculation that the tumor in her head may have diminished the hearing in Ellie's left ear even before chemo... the same way that it affected her left eye - but less severe (as she has no vision in the left eye). Her right ear is able to pick up most of the tones used in speech, but her hearing in the higher ranges - such as those used when saying the letters t, f, s, and th - have diminished. Her left ear tested worse than that - she had some difficulty hearing tones in the normal ranges. It was somewhat sobering to hear this in so many words, but we have not noticed much of a difference in Ellie's everyday life thus far. Unfortunately, she will be receiving the drug that affects her hearing next round again. I didn't realize that until now. (I had mistakenly attributed the wrong drug to the hearing loss.) For now she is able to carry on without the use of hearing aides, but they may become necessary in the future.
The big news in our lives right now is that we will be heading up to New York on Thursday to consult with a doctor at Memorial Sloan Kettering. We were planning to go there at the end of Ellie's chemo in order to begin treatment with the Monoclonal Antibody, but we have decided to go now. We researched this hospital months ago and planned to transfer to New York, but all of the doors seemed to close at that time. We then decided to wait until the end of chemo, but now the doors have all opened and it appears that this is God's perfect timing for the move. We have been very impressed with everything that we hear regarding Sloan Kettering. Neuroblastoma is a very tricky cancer to treat, and it is also relatively rare - many hospitals see only several cases per year. (I believe that Ellie is one of about five NB children at our hospital.) Sloan Kettering specializes in NB, and they treat hundreds of children (and even a few adults) with this type of cancer every year.
I know this sounds like it's all happening so fast... because it is! We just started seriously checking into the move on Friday, and now we will be leaving on Thursday... with an appointment to see the doctor on Friday. I think that I have whiplash! We have spent hours on the phone and have been running around like headless chickens, scrambling to make all of the arrangements. John, Ellie and I were able to get a flight with Corporate Angel Network - a wonderful organization that arranges FREE flights for cancer patients and their parents (also adult patients and one companion) with generous companies who donate empty seats on their corporate jets. It is such a blessing to know that we will not only be able to fly free of charge, but also in a MUCH safer environment for Ellie (no germ-ridden commercial jumbo-jets). This is not a one time offer, but can be used as often as we need to travel to and from NY for treatments. This particular flight will take us to New Jersey, and John's aunt Melanie will pick us up and take us to the Ronald McDonald house. Melanie has been shopping for all of the supplies (groceries, etc.) that we will need to set up there. She will also be there with us on Friday to help with Ellie so that we can freely talk with the doctor.
We do not know what the next few weeks or months will hold for Ellie. At this point, the plan is to meet the doctor and have Ellie undergo a number of tests: MRI, CT scans and such. Once those are completed, the doctor will tell us his recommendations for treatment. John be able to stay in NY for 2 weeks, at the very most. We don't know if Ellie and I will be able to come home for a visit before heading back, or if we will need to stay indefinitely. If we stay, John will make short visits from time to time, and my mom and others will take turns coming up to help me take care of Ellie. (We will also bring Ethan up for some visits.) If there are times when we are unable to fly home but can take a break from the hospital and surrounding area, we will be able to stay with Melanie and Richard in Conneticut. Well... that is the plan as we know it now. I will be sure to let you know what is happening as things unfold.
John and I were talking tonight about how we feel right now. Our hearts have been so full these past months with the serious flood of emotions surrounding Ellie's cancer and treatment... not only sadness, but so much tenderness and even unexpected joy. Now it feels like we've unzipped the giant suitcase and stuffed in a whole bunch of new emotions (ok, give me a break here... I'm in packing mode...) We have been energized with a kind of anticipation and excitement that seems almost surprising in light of the serious circumstances. We just can't help ourselves... it's like we're embarking on an adventure! We figure that since we need to do this, we might as well enjoy it as much as possible along the way. On top of all that, we have that deep down peace that flows through the farthest reaches of our hearts that tells us this is right... that this is God's clear leading for our precious daughter. A couple of years ago, during a particularly trying time, God gave me some beautiful verses in Isaiah. They have been every bit as meaningful to me in these past six months as they were when I first read them. Isaiah 30:15 says "In repentance and rest you shall be saved, in quietness and trust is your strength." Verse 18: "Therefore the Lord longs to be gracious to you, and therefore He waits on high to have compassion on you." Verses 20-21: "He, your Teacher will no longer hide Himself, but your eyes will behold your Teacher. And your ears will hear a word behind you, 'This is the way, walk in it,' whenever you turn to the right or the left." His leading has been as clear to us as if He had whispered directly in our ears at the fork in the road. And so... when you envision the freezing masses on the streets of New York City... I will be the bright teal spot in a sea of black coats (yes, I had to rebell against the black trench coats) and we will be the little family that you might pass without a second glance, except for the unforgettable little girl with no hair peeking out from under her fuzzy pink hat, with shining blue eyes full of hope and anticipation!