Today we went in for Jake's first surgery. What was supposed to be a 2 hour surgery, was four. They put in his chest port, biopsied his liver in several places, took a little bone chip from his femur, did a little digging around the large mass, and took bone marrow from both of the front and back hips. Dr. V said the liver had many more lesions than he expected and he didn't like this but he was confident that he got what he wanted for a good biopsy. He also looked around and found the large mass to be "squishy". This being good in the case that it didn't seem to be "stuck" to his organs and feels it should shrink with the chemotherapy. All in all, a succesful surgery and now we would wait on the pathology to come back to do three things: first, confirm his predicted Neuroblastoma, second, to find if it is in his bone marrow, and third, to stage his cancer. They have prepped us well for it to be high level. We have other tests coming this week before we meet back and

Henry and I

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have this underlying fear that there is something else lurking - every time we meet there is more. Thursday seems so far away but there is much to do this week and we have to get Jake through the next few days. The surgery was hard on him - it was a lot to do at one time. There are 7 cuts on his little body and he needs healing. So the wait begins...

 

Yesterday we went in for our CT scan.  All went pretty well.  They told us we would have to sedate Jake, we didn’t.  He did great. He did need an IV and that wasn’t a nice experience but we were in and out in a couple of hours.  The nurse that was overseeing us was nice enough but not overly warm and fuzzy, but as we left the CT scan, her demeanor changed.  She brought Jake two very nice toys for being so brave and then she hugged me, told me to be strong, and she would be praying for us.  Henry and I just looked at each other, both of us thinking that was odd.  Today we found out why.   Our meetings have usually consisted of words like tumor and mass and anomalies. The word cancer hasn’t been used that often.  This gave me hope, even though the definition of all of those always circle back to the word cancer. They had prepped us that they felt “the place of  origin would be found elsewhere, probably in the abdomen”.  All I’ve been praying for is that it’s not there.  We can deal with bone cancer but it’s hard to wrap your mind around the idea that your child could have cancer in the abdomen – the abdomen is so vague and vast. I’ve been praying and praying and praying all day, all night, every waking moment… “God please take this, don’t let it be in his abdomen”.  Our doctors entered the room together, they sat down and began.  “It is cancer.  It has all of the characteristics of Neuroblastoma and just as we suspected the origin is in Jake’s abdomen.  The mass is about the size of a grapefruit and there are spots in the liver.  The next step is to biopsy and we can do that tomorrow.”  The LIVER!?? I couldn’t breath.  Henry’s eyes welled up, his voice was unsteady.  He asked a couple of questions. They said the abdomen, they never mentioned the liver.  How could they know that though, right?  They continued, “We’d like to start treatments as soon as possible… Jake will need a chest port.  We can do that at the same time as the biopsy.  And while he’s under we need to get bone marrow and see if it’s in the marrow.”  WHAM!!!  We were stunned… how much more?  When will we know everything?  What is the biopsy good for? So many questions and they answered them all .  We found that the biopsy stages his cancer and it gives them the cells to officially diagnosis him as Neuroblastoma as well as other exploratory measures to help them plan Jake’s treatment. We would head into surgery tomorrow and they would have all of the pathology results back next Thursday.  How does this happen?  Last week we were living with a “healthy” four year old boy.  A week later, our world was spinning out of control.

My tummy was in knots today. Stepping out of those elevators for the first time is an emotional experience. There were no tears, but lots of anxiety. As you walk in and you see all of the children, it’s hard to stomach. To think that my child is in the same category as some of these children is hard to believe. Some of them look really sick. Many of them have no hair. My child looks healthy. He’s having a good day. No fever, good energy, spirits are high. He has no idea where we are and what this means. We filled out our paperwork and they came out to ask for our disk from Dr. Wong’s office. I FORGOT IT!! Crap! How did I do that? I had it in a safe

place! In my car so I wouldn’t forget… We took Henry’s car. (Smaller, easier to park, better on the gas). Crap! Crap! CRAP!! How do you forget the scan, which is the whole reason we are even here?! The lady smiles and tells me it’s OK. They would like to have it, but they’ll do more scans anyway, it’s OK. We get to the back and meet Dr. Morali and Dr. Foster. Jake is blubbly and cute and they all talk dinosaursars. This puts Jake in the right frame of mind to cooperate. They are kind and the mood is light as the tell us, “This appointment is just a consultation, nothing to be worried over. We really don’t know what this is yet. There is much to find out and we’ll take a look at Jake and figure out if you are even in the right place.” They remind us that what we saw is still very undefined. We just don’t know. They have lots of questions for us, we have lots for them. We are then sent for a high def x-ray of Jake’s legs. When we return, the mood is different and much more serious. They pulled up the scans and showed us that Jake has “spots on both of his femurs, his knee cap, and his pelvis”. This is NOT what we expected. I have that feeling again, of falling off a swing flat on your back – talk about knocking the wind out of you. They went on to say that they do not believe this to be Osteosarcoma but possibly Neuroblastoma. It is showcasing all of the characteristics of that disease. AND, they don’t believe these anamolies to be where it started, they believe the source of origination will be found somewhere in the abdomen. We plan for more tests and to meet up later in the week. We leave stunned and confused and terrified. A while back, our Tues Girl’s Bible Study did a study on Breath Prayers – that kept running through my head. I couldn’t think of what or how to pray… all I could pray was a simple breath prayer… LORD, help us!