What a way to start the day! Zack comes out of his room angry. He starts hitting himself, the bed, pretty much anything he can hit his into. He had to start drinking a lot of water last night, (to ensure hydration for todays treatment). He fell asleep around 10 pm and when he woke up this morning his phone was lying in a puddle of water (where the glass of ice had melted and left water on his nightstand.) It turned on but he couldn't do half of the programs that are loaded on it. He was SO angry and somehow I know it's more than just the phone. He wakes up and right now all he has to look forward to is... well..... if I can't answer that, I'm not sure he can. I assure him that we have insurance and will get a replacement phone today so that he can still communicate with his friends.
Okay, we already know that "wishing" for a short day doesn't make it so. Zack and I arrive in time for his 9 AM radiation treatment. Fifteen minutes later they are done and we go upstairs in the center to see if they can fit him in early for his chemotherapy (our original appointment was for 11 am). Within 30 minutes, the port is accessed and we are told his counts are too low, so he needs a blood transfusion. They explained that his count needs to be at least a 10 when undergoing both chemo and radiation. A higher count than when just on chemo because the radiation also kills more cells (both good and bad). Usually if it is around 8 and he is just having chemo, they can wait a couple of days for the transfusion, however, undergoing both treatments they can't wait as he will become too weak. Melanie tells us to go ahead and get his phone exchanged as it will take about two hours for the blood to arrive.
We drive about 10 miles up the road from the center and file an insurance claim with US Cellular (in my opinion THE BEST!!! cell phone company out there....) A new phone is on its way and will be here by Friday. In the meantime they have given him a loaner phone so he will still be in touch with his friends. We stop and grab lunch to take back to the center and arrive with 30 minutes to spare until the blood arrives.
Zack's frame of mind is our main concern today. There are days when it is school work, friends, boredom and maybe even what his next vehicle should be. But when It comes to his state of mind that's when I call in the big guns! Once we returned it didn't take long before he was asleep while receiving the transfusion. At one point he woke up when the machine was beeping and I thought he was going to throw it through the window in the door. He became so angry, just like this morning with his phone. I had to be firm, but yet try and calm him down. I jumped up and turned off the sound, he looked at me and fell back into a deep sleep. I went out to get the nurse and ran into Dr. Bottom. I explained to her about his anger and frustration. The consensus was that "he is soo over it!" She, the nurses and the caseworker all are in agreement. They explained that most of us think it must be so difficult for young babies and toddlers to have to go through all of this, but their experience has been that it is much harder for teenagers, they already have their life set up, friends, proms, school, etc.... When their lives are disrupted, they don't adjust as easily. They also have a better understanding of what is going on and the risks. I'm not sure I agree 100%, after seeing a two month old little girl getting a transfusion and screaming at the top of her lungs. I think this pretty much sucks, no matter what age you are.
They had offered to have Buddy, (a minister) come in and talk with him. They said all the teenagers love to talk with him. I told them that there really wasn't a connection with Zack, when they had met previously a couple of times. He is a very nice man, but Zack never really talked with him that much. It turned out that he wasn't even working today, so they called Miriam in (one of the social workers) to talk or just listen. The staff suggested that I leave them alone in case he would open up more (they don't really know that Zack pretty much tells it like it is to us all and doesn't hold back ) but I obliged and went into the front room to give them some space. Little did I know, that was exactly what I needed. The minute I was in the room alone, I sobbed and released a whole days worth of tension. My old fears came back. What if I'm not doing enough for him. What if I am screwing up his life by making him have these treatments. I KNOW what "they" tell us, on an intellectual level.I know the facts and the odds and there is no way I could or would risk him not having the treatment, but on an emotional level, if I were Zack, I would hate me! Nancy calls me ( as if she knew), but I'm in such a state that nothing anyone says can comfort me. Bottom line... I'm okay when Zack's okay. Isn't that a normal response for any parent?
I go back into the room and Miriam told me that Zack mentioned he "might" be interested in a special counselor who works with teens in treatment. Of course, we have offered this to Zack before, but if they know someone who deals especially with this issue, we are 100% in favor. Zack is still down, but the closer we get to the time to leave, the more alert he becomes.
We finish up with the transfusion and then at 5:30 pm he is given the chemo (Vincristine, which is usually just a push into his port). We were out the door by 6:00 pm. As we get ready to head over to see our dear friend Amy, (Drake's Dad, Bill, is her sweetie) who had surgery today. We are given permission for Zack to go into the hospital as long as he wears a mask, but the Doctor also very firmly tells Zack to make sure he is taking his Lovenox, "with your numbers so low and the radiation, we don't want you to have a coronary embolism." OKAY, let's not scare the shit out of mother and son please!! We know every risk, but geez freak a woman and boy out!! Zack is still giving himself shots in the stomach twice a day to avoid blood clots. He still HATES this with great passion! He is now going on three months of the shots.
We see Amy, Bill and meet Amy's mother . We visit for a short while and for the first time today, I see Zack smile and actually laugh. Amy and Bill are his second "parents", and they can bring out the best in him as well. We excuse ourselves as we are exhausted and hungry. We decided to stop, grab dinner and eat in the car on the way, after being gone nearly 12 hours we are anxious to get home. We are greeted by Sidi, Anubus and of course Frank who had just arrived from hanging out with his fishing buddy Matt. He is the friend that will taking Zack for his radiation tomorrow. Granny Linda is going to bring Zack on Thursday, when he needs radiation and then labs. She can drop him off, go and see John (father in law) at the nursing home and when Zack is ready, come back to pick him up.
The only thing we can do as we end this day is hope tomorrow is better. Hope that Zack's day will be easier and his spirits are up.
They had offered to have Buddy, (a minister) come in and talk with him. They said all the teenagers love to talk with him. I told them that there really wasn't a connection with Zack, when they had met previously a couple of times. He is a very nice man, but Zack never really talked with him that much. It turned out that he wasn't even working today, so they called Miriam in (one of the social workers) to talk or just listen. The staff suggested that I leave them alone in case he would open up more (they don't really know that Zack pretty much tells it like it is to us all and doesn't hold back ) but I obliged and went into the front room to give them some space. Little did I know, that was exactly what I needed. The minute I was in the room alone, I sobbed and released a whole days worth of tension. My old fears came back. What if I'm not doing enough for him. What if I am screwing up his life by making him have these treatments. I KNOW what "they" tell us, on an intellectual level.I know the facts and the odds and there is no way I could or would risk him not having the treatment, but on an emotional level, if I were Zack, I would hate me! Nancy calls me ( as if she knew), but I'm in such a state that nothing anyone says can comfort me. Bottom line... I'm okay when Zack's okay. Isn't that a normal response for any parent?
I go back into the room and Miriam told me that Zack mentioned he "might" be interested in a special counselor who works with teens in treatment. Of course, we have offered this to Zack before, but if they know someone who deals especially with this issue, we are 100% in favor. Zack is still down, but the closer we get to the time to leave, the more alert he becomes.
We finish up with the transfusion and then at 5:30 pm he is given the chemo (Vincristine, which is usually just a push into his port). We were out the door by 6:00 pm. As we get ready to head over to see our dear friend Amy, (Drake's Dad, Bill, is her sweetie) who had surgery today. We are given permission for Zack to go into the hospital as long as he wears a mask, but the Doctor also very firmly tells Zack to make sure he is taking his Lovenox, "with your numbers so low and the radiation, we don't want you to have a coronary embolism." OKAY, let's not scare the shit out of mother and son please!! We know every risk, but geez freak a woman and boy out!! Zack is still giving himself shots in the stomach twice a day to avoid blood clots. He still HATES this with great passion! He is now going on three months of the shots.
We see Amy, Bill and meet Amy's mother . We visit for a short while and for the first time today, I see Zack smile and actually laugh. Amy and Bill are his second "parents", and they can bring out the best in him as well. We excuse ourselves as we are exhausted and hungry. We decided to stop, grab dinner and eat in the car on the way, after being gone nearly 12 hours we are anxious to get home. We are greeted by Sidi, Anubus and of course Frank who had just arrived from hanging out with his fishing buddy Matt. He is the friend that will taking Zack for his radiation tomorrow. Granny Linda is going to bring Zack on Thursday, when he needs radiation and then labs. She can drop him off, go and see John (father in law) at the nursing home and when Zack is ready, come back to pick him up.
The only thing we can do as we end this day is hope tomorrow is better. Hope that Zack's day will be easier and his spirits are up.
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