Our 16 year old son, Zack,(Zackman) was diagnosed with Ewings Sarcoma in June 2012. As a Senior in High School, his entire life changed. This blog follows the daily routine of chemotherapy and radiation, Home schooling, changes in lifestyle, friends,physical and emotional challenges. Join us on Our Journey in curing Ewings Sarcoma. (You are welcome to post comments , please be respectful!)
Today we had an MRI. I asked the technician why they don't take an MRI of the entire body, he says that they are not that advanced yet. The PET scan will show the entire body. I recognize the woman behind the counter, she has known Frank and his family her whole life. She remembers me and my sister, as she graduated the year before us. A little more comfort from a small town, you know the people.
This is one of the MRI pictures, you can see where the tumor was removed. An MRI shows "slices" of the area, so this basically looks like it was sliced in half.
Zack is ready, he doesn't like the idea of a needle, but is tough and acting cool. I'm not allowed to go back with him, but he doesn't need me there, He has it all under control. Forty Five minutes later he is finished. We are told to wait for a disc so we can bring it to the protocol doctors. Zack is ready to drop me off at work and go hang out with his friends. He is done with the tests and wants to drive around and be cool.
He drops me off at work, the office is closed and a perfect time to catch up on the work I was behind on. I am keeping busy while waiting for the phone to ring. I call the office, no news yet but she guarantees that Dr. Pollock will call. He is great at communication and will not go home until we know the news... She is calming and very sweet and understanding. I apologize for calling so many times, with questions.. appointments, etc.. she says I can call her as many times as I like, that's what they are there for.
It is 3:30 - 4:00 I don't even know. Dr. Pollock calls, asks how we are doing so far, I tell him overwhelmed and he tells me he will always be here for us. He tells me that the results are in. the MRI shows that everything was removed. There are no traces of anything. Dr Bridges removed everything. Yes, for the first time I can mention his name, he is vindicated, he took care of my baby and did a great job. Bedside manner aside he did a good job. Of course we found out that he should have taken x-rays or MRI prior to the surgery to see exactly what he was dealing with, but the angels are with us and it all turned out great.
The second part of the good news? the blood work came back negative. Blood cell count is very good and no signs of anything abnormal. I could kiss this doctor, I don't even think his wife would mind. He is my angel on earth. What does this mean? There is a pretty good chance that there is nothing anywhere else in his body. The PET scan will show this for sure. He is still going to need chemotherapy to ensure complete removal of the bad cells if there are any, but that is for the next set of Doctors with the protocol.
I thank Dr. Pollock over and over again. He lets me know that even though another group is taking over, ANYTIME we have questions, he is just a phone call away.
Zack picks me up at work excited about the news, Frank still questions why the chemo and how will they tell if it is gone if they can't see it now? All questions for the next team of Doctors,.
Next.... A much needed vacation to Jekyll Island, GA with Mom. Meet with the trial doctors on the 11th and the PET scan on the 13th...... then........ the journey continues.....
Zack insisted on going to see the Coach on his own. He wanted to tell him that he would not be able to play. He told him about the diagnosis and chemotherapy. The Coach asked if he would please keep him posted.
The next morning Zack received a text from the Coach. "I have thought about your situation and we have decided that we would still like you to be a part of the team, we will work around your schedule and see what we can do to help you out."
I cry (just a little) as I see a community come together again, as they had years ago for my dear friends. There is something about living in a small community, when you need them, they are there.
I dare not forget the people from around the world that have shown their love, generosity , support and time. We are truly blessed!!!!
accept my apologies for a group email, I have been on the phone all day
and feel this is a better way to reach the masses of amazing friends
and family. First let me say that we feel so blessed, we
have an amazing support team and feel each and every one of you with
us. Zack has asked that we keep this information within our immediate
friends. He doesn't want to be labeled, and we want him to have as
normal a time as possible. We also want to keep upbeat and are asking
positive words and thoughts. We KNOW this is a HUGE part of his healing.
had a large mass on his left leg. He had surgery to remove it on June
6th and it has been determined based on a pathology report to be Ewing Sarcoma.
This is considered an unusual form of cancer which has been known to be
aggressive. There are few cases around
the world (leave it to us to come up with something different...),
however there is currently a protocol in Asheville for this specific
Our current plan: We received the news regarding the
pathology report today, had blood work done and tomorrow we go for an
an MRI on the area where the mass was removed to ensure that it was
completely removed and no residuals are there. IF everything was
removed (the surgeon is convinced he got it all), we proceed to
Asheville for a pet scan (no we are not having our pets scanned...) this
will determine if there are any other masses. IF they find another mass
or some other areas then another surgery will be the first step.
(surgery alone will not cure the sarcoma, it requires both surgery and
chemotherapy and in some rare cases radiation.) the success rate is
high for a cure and we are confident that this is the way to go. Based
on reports once this is cured it doesn't return. Woo hoo!!! The
next step will be to start the protocol of chemotherapy in Asheville.
There is a clinical trial (like they have in the "big" teaching
hospitals all over the US. This is what they call "protocol" ( I'm
learning a whole new language). This trial ( Novel Combination
Chemotherapy for Localized Ewing Sarcoma) is being studied in the US,
Canada and Australia. They are following the same protocol as a
pediatric oncologist with added meds to the "cocktail". the trial is the
first COG trial available through National Cancer Institute Support
We are in the surgeons office for the last time. He is going to remove the stitches. I am anxious, but told Frank he didn't need to come, he is after all working very hard to help pay for all of this as we have no insurance. We were only having the stitches out! The surgeon comes to get us, not the nurse, he is all bubbly, I am already suspicious, where is the asshole that was condescending just the other week? He calls Zack buddy, and is smiling. I don't trust him. We walk into the exam room and he says, "let's take these stitches out first, then we'll talk." SHIT!!!! What the hell is he going to say? He removes the stitches, teases about the nurse being to blame if he hurts Zack, even so the nurse is not in the room. My heart is racing, I can barely breath, "hold it together, practice your relaxation, breath, think positive thoughts, throw out the negative".
The tumor (Tumor??? he has never called it that before? I don't like that word) The tumor, was cancer. It was a type of sarcoma. I ask him to spell what exactly it is, he tells me he has spoken with the pathologist, but hasn't received the report yet. It is on its way from Cleveland. What is next? Where do we go from here? I wanted out of his office, I wanted to be with someone that knew what the hell they were talking about, someone with feelings. He tells me he brought Zack's paperwork downstairs to the Cancer center. "They are going to lunch, but if you hurry, you can catch them and make an appointment". We leave, not saying another word, We run past his receptionist and tell her I will call later for the bill. Zack is guiding me down the stairs like he is in charge. He was.. at the time.. he became the adult. Even for just a minute. We go downstairs, there, behind protective glass sit two women. They are calm, sweet faces and ready to handle whatever I throw at them. I tell them who we are, they are ready for us. They make an appointment for 28th, just two days away. His name is Dr. Gregory Pollock. He is a hematologist, another word I never heard. I ask the ladies "who are you people? what do you do? Why are we here? One of the ladies explains in detail what they do, I hear, but don't hear. Zack later tells me everything that he heard. Again, he is the adult and is calm. He hugs me and tells me " calma, calma Mamma " His Spanish is finally paying off. Ha ha.
We leave, run up the mountain to Franks work site, breaking the news. All we know is we need to meet with this new doctor to find out what the next steps are. I see the fear in his eyes, The trauma that we went through with his mother years ago comes back to haunt us.
After many phone calls for the pathology results, I finally demand for the surgeon to check Zack's leg. It looks swollen and I want to make sure everything is OK. Zack's leg is checked out and the surgeon states the report is not back yet. He has spoken to the pathologist several times, but they want to be 100% sure that they know what this is. I ask if this is good news or bad news. His answer? "Well if it's good new then it is benign, if it's bad then it's cancer" After listening to his double talk for several weeks, I finally lost it and reminded him that the "man" he is talking about is right in front of him and is still only 16 years old!!! I told him that I wasn't going to "hold" him to his statement, we just want to have an idea. He responds with the same attitude "I'm not worried, you can't hold me to anything". I told him he was covering his ass and that didn't cut it with me. I EXPECT the results on next weeks visit when the stitches come out, and will camp in his office until they are there!
We wake up ready to deal with the surgery and move on. Zack has had to postpone football practice until the Doctor says it's OK to go back. He is a Senior and has decided to play football for the first time and see what it's like. Of course, being 16, his main concern is getting his drivers license on Monday. That's all that's on his mind.... Not even the surgery can sway him from his ultimate goal of getting that license.
He is more relaxed than I can imagine. We walk into the Hospital and are immediately greeted with more paperwork, but friendly welcoming faces too. We go in the back to prep Zack and he is handed a gown with a hole on the side for an vacuum type hose. What the heck is that??? turns out it is either for heat or air to help make the patient more comfortable. Wish I had thought THAT one up!! The anesthesiologist explains that he may have to put a tube in Zack's throat to keep the medicine, they put an iv in his arm for the . This boy has been blessed with good health his entire life. He was calm, in good humor and trying to make us feel good about everything, Typical Zack, with his warm kind heart and of course sarcasm.
The surgery is 45 minutes long. The surgeon comes out and for the first time since visiting his office, he is smiling. He sits down with us and tells us that Zack did an amazing job, He was able to remove the entire growth. It was amazing as it was not attached to anything as he had previously been concerned about. He said it was totally separate and self contained. There is a large incision, and would require rest for the next two weeks so that it can heal. The growth is sent to the pathologist for review. The surgeon still has no idea what it is, he has never seen anything like this.