It has taken me a long time to sit down and write an update…maybe because I did not have anything to really say. Maybe because there were moments that were so dark for me that I didn’t feel like admitting them to anyone. And although it has been more than 30 days since I have sat down at this computer to type…the concept of time in our house is fickle. Some days are long and others are seem to pass by with an unsual new routine, that we are learning to accept. Some weeks are easy and others difficult…..it has become a roller coaster of sorts; there are some really good highs and then there are some really devastating lows.
To quickly summarize, the first two weeks of treatment for Joey, were intense. We spent one night inpatient for a specialized chemo treatment and then we spent the next two days at the clinic receiving out patient chemo treatments. Some days at the clinic we are only there two to three hours, other days we can be there up to eight hours.
Additionally, Joey also had a chemo pill that had to be taken orally at home. The first two weeks of this intense treatment he appeared okay, he seemed to be tolerating everything well; he was not that tired and our routines were somewhat the same. However, by the third week, is when everything caught up with him. The nausea set in and he began getting sick often, he became lethargic, and his appetite decreased.
As a parent, to watch your child suffer and be helpless is probably the worst feeling in the world. There are many times that I am paralyzed by fear and watch him for hours as he lays in his bed or on the couch….it is during these times that I pray and plead with God. I pray for strength and I pray for knowledge. And I pray that he will give us the miracle that we all have been praying for. It is also during these dark moments that I am truly able to feel the love, positivity and prayers from our community.
But as I have referenced before, Joey is our rock star and because of his strength and determination and his will to win at everything he does…we all will get through this! So there are awful days that he will get sick and then he sits up and continues playing or asks to eat right after! Sometimes, he will play right up until he cannot keep his eyes open and then falls asleep and wakes up asking to play right were he left off!
Due to everyone’s continuing support, Chris and I are able to have Joey continue to work out with his trainers twice a week. It amazes me that he has the determination and mind set to continue to commit to this. Additionally, we also have a massage therapist that is coming to the house twice a week and working with Joey! He is completely enjoying this as well!
Joey also had a visitor at the hospital that not only lifted his spirits, but made Chris and I extremely hopeful too! Mark Herzlich, from the NY Giants took the time out of his busy schedule to come to the clinic and visit with Joey for more than an hour and a half. Joey and Mark looked at Joey’s football card collection; played a little mobile Madden, and looked at silly you tube videos. But more than hanging out, Mark was able to relate to Joey’s fight with cancer. Although their circumstances different, their situations are somewhat similar; and Mark conveyed this to Joey in a way that I or Chris have not been able to. That day in the clinic, was my miracle! I will never be able to thank Mark for that visit or for giving my family hope that day. For those that have not read Mark’s book, “What It Takes,” please do!! I am looking forward to Mark’s next visit!!
And then last Wednesday, we got another little miracle…. Our doctor called and explained that our Foundation One (genetic testing) came back. They were able to isolate a gene and this explains why Joey did not go into remission after the first month of treatment. What is even better news, is there is a medication to help treat this!!! Therefore, the medication was ordered on Wednesday and we have already taken it for three days! We are hopefully able to target the cancer specifically and help Joey go into remission. He still remains at high risk, but our doctors all sound so hopeful!
We realized that we have a long, long road ahead of us, but we feel that God is listening to our prayers. We feel that he is giving our doctors the strength and knowledge and giving us the grace and hope that we need to get through this day by day. So please we ask that you do not stop praying or believing or hoping…..
Beginning tomorrow, we have 30 more days of treatment before we have our next bone marrow aspiration. After that, the doctors will discuss with us what our next options are. We are hopeful that with this new medication that we can put Joey into remission and we can begin a true healing process.
Believe in miracles, pray for us, give us hope!
We are forever grateful to you for your love and support!