Sunday, July 25, 2010

Hard past few days

You never know when it will be the last time you see somebody. I mean, I have known in cases when families return home with their child on palliative care. When you hug and kiss them goodbye knowing that you will never see their face again. But sometimes people leave this world unexpectedly, tragically and too soon. On Friday we lost someone that we had seen only 2 days before, someone who we had not known more than a few years yet someone we felt like we had known a lifetime. This person always left me feeling better about myself after deep conversations, someone who was very wise but didn’t realize it, someone who had a huge heart and someone who both Tim and I had a strong friendship with and will never forget. This person was Megan’s father. Megan came to the RMDH with an obsession with Dylan, she was so cute and told us she was going to marry him one day. Dylan and Megan were partners at the MSKCC prom one year and I recall a time that Megan told the Nurse at MSKCC that if she could change her last name it would be to Hartung. This bond naturally led Tim and I to be good friends with Megan’s parents, Mark and Donna. We would always joke with Mark about him being our future brother in law. Megan’s family had more challenges in life that I believe more than most, and on top of this their beautiful daughter Megan was diagnosed with Neuroblastoma. Tragically Mark was found by his wife Donna, in their room at RMDH, Donna had just returned from Megan’s scans with good news results and couldn’t wait to tell him. Mark had been in terrible pain for many years after an accident and more surgeries than anyone I have ever met. Tim and I rushed to Donna and Megan's side not more than an hour later. As we walked to the RMDH, we saw a few parents out front who just looked at us and lowered the faces as we passed, not a word spoken as we entered the elevator or as we passed staff and friends in the hall. We all silently spoke with the looks on our faces, Mark was loved by many, and most knew how close our families were. We are going to Miss Mark so very much, and I cannot even imagine how much Donna and Megan will miss him. Megan is a real Daddy’s little girl, and Donna has just lost her best friend, our hearts are just breaking for them. I will miss the emails and texts he use to send me every few weeks saying what great parents we were and how proud he was of us getting our own apartment and not giving up. He always praised us so much, and you knew it was straight from his heart. Please pray for Donna and Megan, this world can be so cruel to such good people, I don’t know why, all I can say is it’s just not fair.

Dylan’s scans gave us a scare this week. Dylan was scheduled for his treatment on Thursday but it was delayed due to pending MIBG results. Finally hours later Dr Modak said that the scan had shown possible progression with a new faint spot seen on the skull. Dylan was sent to MRI immediately. Treatment was cancelled and we were left with the agonizing wait on the MRI results. Thoughts filled our minds all night, neither one of us could sleep. Was this the beginning of the end? Chemo doesn’t work so will we even try it again and put Dylan through that? What would our options be, so limited by only one bag of stem cells left. We told ourselves it will be how it will be, we just need to know one way or the other. The next day I had to go to work, cell phone by my side and anxiously waiting a call from the hospital. By 10:30 a call came through, that the MRI was negative and to bring Dylan in now for his treatment of IMC-A12. I called Tim right away who was also waiting for the call. He saw Dr Modak who said that he looked at the MIBG scans himself and could not see what the radiologist was suggesting was there and that since the MRI was negative, he feels it was no concern for disease progression. Wow, now we can breathe again, a bit, anyway. Tomorrow the 26th July Marks Dylan's diagnosis anniversary...he will have had Neuroblastoma 6 years.

Cain left for Music Camp this morning, he was up at 6am with bags packed and his bass guitar. He will be gone 2 weeks, and I miss him already, but I am glad that he has a vacation for the summer, and can share it with his best friends from the RMDH.