Monday, May 16, 2011

Belated entry

It’s been a whirlwind of craziness lately. Time is just so hard to find, hospital, work, doctors, work…So finally I am doing an update that I should have done a few weeks ago. It’s been a challenge to say the least, with Tim and I on opposite work shifts, Dylan back and forth to hospital and trying to meet the needs of home instruction state testing. I have lots to say, first off let me say that in the past few hectic weeks we have had great loss and sadness as well as good times and joy. Typical of the pediatric cancer world really. Some days you just feel like you can’t go on, and other days make you fill with joy and happiness when the good times come along that you appreciate so much more. First off is the news of Dylan’s scans. Two days into Dylan’s new clinical study, we were told that his MIBG scan results were in and they gave us the printed report.


  1. Nonvisualization of previously identified MIBG-avid foci in the skull and the left proximal humerus.
  2. 2. Grossly-stable appearance of other MIBG-avid osseous metastases in the spine, bony pelvis and bilateral femurs.

Whoooooaaaa! It disappeared by itself? The last reading was wrong? Everyone’s Prayers worked? I don’t really care how but it did…was it a mistake in the last scan? Who cares? It’s gone! Tim, Dylan and the doctors decided that since Dylan is already 2 days into the new clinical trial, that we may as well continue as long as the side effects are not too severe and see what the next scan says that’s due after this first cycle of new treatment. Who knows, it may just affect the stable disease that lingers in his spine, pelvis and legs. The first week involved 5 days of Vorinostat and 3 days of Etoposide (Chemo) and Dylan was very fatigued and slept a lot. Week 2 and no treatment (just blood draws twice a week) and his only side effects were some fatigue and a poor appetite. We are on week 3 and he is side effect free (on the outside) and no hair loss, but his platelets are down to 35 and his ANC (Neutrophils) are at 1. Most likely by the end of the week he will be neutropenic and need GCSF injections and probably a platelet transfusion. Week 4 is Vorinostat and more chemo…then 2 weeks off, then scan time. Next week will be the hardest to try and keep him well, I think that we will pull him off study after the scan, unless the results see a movement of decrease of disease.

Next on the list of events to tell you that Dylan had a wonderful time in Florida and made a few video blogs of the trip, but no photos :( It was a rest he really needed, and he came home looking and feeling wonderful. He spent most of his time in the pool or at the beach with a banquet dinner at the Country Club for Easter. Cain performed at Carnegie Hall once again with the NY Pops and even though Dylan was also supposed to perform, he was unable due to not feeling good after treatment. The Children from the Ronald McDonald House sang and danced with Maurice Hines and Cain played on Bass Guitar. All was lost for Dylan, he performed tonight at the Ronald McDonald House Annual Gala at the Waldorf Astoria. Cain’s song that he wrote for Dylan called “I will always be there for you” was recorded a few weeks ago at the Magic Shop, a well known studio to the stars who include Bjork, Cyndi Lauper, Oasis, Lou Reed, The Rolling Stones and Sonic Youth just to name a few. This dream became a reality with the help of the New York Pops and families of the Ronald McDonald House. The debut was tonight at the Gala and I am in the process of uploading the footage to Dylan’s Youtube Channel. Please excuse the moving video, it’s hard to cry and video at the same time! There are photos on Dylan’s Facebook also. The song will also be available on iTunes soon with 70% of the proceeds going to the Ronald McDonald House of NYC. I have a suspicion that this song may even become the RMDH theme song! Sorry about Dylan’s photo link, they are closing down the website I use, so again I have to reload and create a new one. I also have lots of broken links and need to update the house Heroes page…I will work at it every chance I get…eventually.

Bear officially became a therapy dog yesterday, passing his evaluation with flying colors! We are so proud of him. Now once we receive his ID badge in the mail, he can visit the kids at RMDH on a weekly basis and be included in all the “Angel on a Leash events”. It feels great to be able to share him with others and especially with the kids from the house.

With great sadness and despair, Nick and Jake both became angels. Both fought so hard for so long. I don’t know what to say, the loss of these 2 NB fighters has hit everyone hard. Many other children we know at the house have also received very bad news and are heading down the palliative care path. There’s a cloud hanging over all who are affiliated with MSKCC and RMDH this month in particular. At tonight’s Gala, many of the staff and parents just had that sad look in their eyes, hidden behind smiles and many broke down when the band played their song. It was all filled with words we in the cancer world can relate to so much, that the tears just flowed. All our love to the Franca and Miller family, your loss is with us all.