Over the weekend, Dr. Greenfeld, Dr. Li and Dr. Aaron called to check on Tori. The surgeon and oncologist assured me they were confident it had been a cyst. But, they reminded me, we need to wait for the pathology report. Dr. Aaron didn't say that, he just kept reminding me that I had his personal number and to call me at any time. A friend told me that if it takes a long time to get the results it was probably negative. If the DX is bad, they call right away. I tried to forget that Victoria had spent four days in the Oncology ward at the hospital.
Chloe and I were scheduled to fly to Sacramento on Thursday morning, March 5th. By Wednesday things were good. Victoria was recovering nicely and I was ahead of schedule with my packing. Dogs were taken care of, the fridge was full, laundry was almost done, you know, those mom-packing duties that have nothing to do with putting clothes in a suitcase.
12:03pm Dr. Li called. He said the pathology report was in. Suddenly I knew I didn't want to hear him say it. Unable to hear my thoughts, he did anyway. She had a malignant tumor on her left ovary. Not O.K. He continued, her right ovary was negative for malignancy and there was no evidence of malignant cells in the fluid. That was very good, he said, since the tumor had ruptured and had been filling her abdomen and chest with fluid. He said the prognosis was very good, not to worry. Still, not O.K. He said it was a Granulosa Cell Tumor. The lab could not tell if it was Juvenile or Adult, so they had sent the samples to Johns Hopkins in Maryland. He wanted us to come in Thursday morning. Could we do that? Um, yes. I hung up and went blank. Everything was gone. I was in shock, like for real. I don't know how long I sat there with nothing going through my mind; looking at my call log, I think it was about 10 minutes. I remembered I had a husband and I needed to tell him. He couldn't be my first call though, I needed to say it out loud before trying to tell him. I knew I would fall apart if he was my first phone call. I called July and told her I wasn't going to Sacramento and gave her the information she needed since I wouldn't be there. I called Janelle and went through with her what she needed for the same reason. Dr. Greenfeld's office called and he wanted to see us the next morning also. Could we come in at 10am? I said we had an appointment with the Oncologist at 9. That's fine, she said, just come over when you're done. Then I called Randy. That was the hardest phone call of my life. I don't remember it. I do remember standing under an orange tree on the side of the house and telling him I was going to tell Victoria. That's all I remember from that phone call. She knew before I said it, of course. She fell apart and said she knew. We all knew. The oncologists, the surgeon, and especially - Dr. Aaron. Randy knew and I did too. Nothing about her ordeal the week before was normal for an ovarian cyst. The lack of pain, the extreme swelling, the scans, her lack of appetite, all indicated a malignant tumor. The only thing that threw us all off was that it didn't look malignant.
Victoria didn't want me to tell Chloe before she swam Zones. Her first Zone meet. I didn't have a choice, since I was supposed to fly out with her in the morning. I chose to send her to practice and tell her after she got back home. I don't remember taking Jaytlyn and Chloe to practice, but I remember telling her as she was finishing packing later that night. I told her that they found a tumor and she would have to have surgery. We were meeting with the oncologist the next morning to discuss chemotherapy, so I couldn't fly to Sacramento with her. O.K. she said, and continued to pack. I must have had a strange look on my face because she said, It's not like she's gonna DIE! Obviously, I was over-reacting, in her opinion. Yes, I said, she's not going to die. Ah, the ability of youth to put things in their most basic perspective.
My previous three posts I edited for the sake of time and interest. If you asked me, I could tell you more, but those details about those days just aren't important. Not this day. I don't remember anything else. Did I make dinner? Did we eat? Did I go anywhere? Did I talk to anyone else? I don't know. Most of the afternoon and evening are just gone. All I knew was that my baby had cancer, and that wasn't O.K.
Friday, March 20, 2015
Thursday, March 19, 2015
Wednesday, February 25th
At 10am the Oncologist came in to see Victoria. He said they had the US results and they were consistent with the CT scan. Not really what I wanted to hear. He said they would do an MRI with both contrasts, oral and IV. "Has she eaten anything?" Are you kidding me? No. Good. Yeah, right. When they had the results the surgeon would compare all three of them and make a decision as to what the best procedure would be. OK. (Yeah, I know I'm sounding stupid, but really, I'm dog paddling through this.) This was not the first time I had been at a hospital with someone else as a patient. I have been with many relatives in the hospital for extended stays and various tests. When in the hospital, and the Dr. says they are going to run a test now, that means that hopefully sometime today they can squeeze you in typically about 8 to 10 hours later. About a half hour later, the nurse came in and explained the procedure to Victoria, and went over the consent forms with me. I signed the MRI consent form. Randy was able to leave work and came to the hospital. We told him they had the US results and told him about the MRI. At 11:30, a different nurse came in and said she would take her vitals now to get ready to go down for surgery. No, I corrected her (yes, I was nice) she's going down for an MRI. "I'm so sorry!" she said, "I thought it was surgery!" I told her I though they would do surgery Thursday. OK, she said, "I'll go check, I can't believe I got that wrong, I'm really sorry." Randy looked irritated, but kept quiet. Before she could leave the room, there was another knock on the door. The oncologist came in and said there's been a change of plans. The surgeon looked at both tests and wants to go in immediately. He thinks her ovary may have ruptured and wants to do any needed repair ASAP. Before I could even think my standard O.K., there was another knock on the door. They were here to take Victoria down for surgery. Now? Yes, now.
Dr. Aaron had mentioned stopping by to see Victoria, I texted him and said we were headed to surgery. He replied that he would be there in half an hour. By 12:30pm we were in pre-op. typical pre-op. The pre-op nurse came in and asked a bunch of questions. The surgical nurse came in and asked the same questions. The Anesthesiologist came in and asked the same questions. I wanted to go find a white board and write out the answers and just hold it up for the next round. I didn't have to, Dr. Aaron arrived just before the surgeon, Dr. Greenfeld. Nice to meet you. I was so glad Dr. Aaron was there then. Victoria was doing very well, but he made me feel better, and I think he helped Victoria feel better about what was going on.
The surgeon removed the cyst, took a biopsy of the other ovary, biopsied a small growth he found and removed her appendix. He sent everything to the lab along with about 500cc of fluid from her abdomen. He also drained about TWO GALLONS of fluid. I wanted them to send it to the ER doc at Banner Gateway, but they already discarded it. Oh well. He showed us pictures, and said everything looked good. We would have the pathology report back in a few days, but was confident it would be negative. But we have to wait for the path report to be sure.
That night they weighed Victoria. She had lost almost 25 pounds during surgery. Wow. She was in a lot of pain, and they said it was mostly from losing so much fluid in such a short time.
She was finally released to go home on Friday. I could never get her a Gluten Free meal. I spoke to two people in the kitchen, a rep from food services (finally, on our last day) two shift nurses and the Head Nurse during our stay. I learned that the kitchen that services patient meals cooks everything, including the GF options, on the same grills and griddles. I kid you not. I told them they shouldn't have a Gluten Free Menu if it's not really Gluten Free.
Dr. Aaron had mentioned stopping by to see Victoria, I texted him and said we were headed to surgery. He replied that he would be there in half an hour. By 12:30pm we were in pre-op. typical pre-op. The pre-op nurse came in and asked a bunch of questions. The surgical nurse came in and asked the same questions. The Anesthesiologist came in and asked the same questions. I wanted to go find a white board and write out the answers and just hold it up for the next round. I didn't have to, Dr. Aaron arrived just before the surgeon, Dr. Greenfeld. Nice to meet you. I was so glad Dr. Aaron was there then. Victoria was doing very well, but he made me feel better, and I think he helped Victoria feel better about what was going on.
The surgeon removed the cyst, took a biopsy of the other ovary, biopsied a small growth he found and removed her appendix. He sent everything to the lab along with about 500cc of fluid from her abdomen. He also drained about TWO GALLONS of fluid. I wanted them to send it to the ER doc at Banner Gateway, but they already discarded it. Oh well. He showed us pictures, and said everything looked good. We would have the pathology report back in a few days, but was confident it would be negative. But we have to wait for the path report to be sure.
That night they weighed Victoria. She had lost almost 25 pounds during surgery. Wow. She was in a lot of pain, and they said it was mostly from losing so much fluid in such a short time.
She was finally released to go home on Friday. I could never get her a Gluten Free meal. I spoke to two people in the kitchen, a rep from food services (finally, on our last day) two shift nurses and the Head Nurse during our stay. I learned that the kitchen that services patient meals cooks everything, including the GF options, on the same grills and griddles. I kid you not. I told them they shouldn't have a Gluten Free Menu if it's not really Gluten Free.
Tuesday, February 24th
I took Tori to school since the appointment was at 9:30, picked her up after 1st hour and made it to Dr. Aaron's office on time. The nurse weighed her in pounds this time, and Victoria realized she had gained at least 20 pounds in just a few weeks. Dr. Aaron asked her a bunch of questions, of course, and I still thought it was probably her gall bladder. Hers would be the third in the family to be removed. He said he wanted a CT scan to be done immediately. The nurse made an appointment for 11am. He wanted the results the same day. Rushed over to the Imaging place at Greenfield and the 60 and we were done by noon. I asked the tech when we would get results and she said in about four or five hours. I thought, o.k., we'll know something tomorrow. I took Tori back to school so she could go to her afternoon classes.
At 1:15, Dr. Aaron called. "Where are you?" he asked. Strange, he's never asked me that before when he's called. "I'm home" "Where's Victoria?" "She's at school." "Good, he said, she can't hear us." Crap, I thought, this isn't good. He told me they found a mass against her uterus. Shit. A cyst? A tumor? "O.K." was all I managed to say. He also told me the swelling was very high, and there was fluid around her heart. He was sending her to an Oncologist at Banner Desert, and we had to be there by 3:30. He told me other doctors thought it was an ectopic pregnancy. He told them no, he knew this patient and she was NOT pregnant! So I called Randy to get Chloe from school, texted Tori that I was picking her up, and there was a knock on the door. I had scheduled all the carpets to be cleaned and the tile in the guest house to be steam cleaned. Great. I showed them in, told them I had to leave, took a shower, packed an overnight bag (as per Dr. Aaron's instructions), picked up Victoria and brought her home to pack a bag, handed my cc to the carpet cleaners and got to the Oncologist by 3:15. Wow.
Walking into the Oncologist's office I remembered "oh, yeah. Pediatrics." the office was decorated like a snack bar on a beach. No kidding. There was even a large boat built into the wall for the kids to play in. I got a kick out of the fact that my child, who, the week before, had been reminding me she's almost an adult, was now sitting in a waiting room designed for six year olds.
Dr. Smith was very nice, and quite calm. She asked Victoria a ton of questions and said she would have an ultrasound done. I really started to relax, and thought, it's probably just a cyst, we'll go home, and have an ultrasound at the imaging place tomorrow. Nope. She said she had already started to admit Victoria, and she just needed to check to see if the room was ready. OK. She told us her associate, Dr. Li would be following Victoria since he was at the hospital already. O.K. I mean, really, what do you say? By 4:30 we were in a room on the top floor of the Cardon Children's Medical Center at Banner Desert. Glad I packed a bag. Randy came to the hospital but had to leave at 7:30 to pick up Chloe and Jaytlin at practice. Dr. Aaron called me on my cell phone. He asked how she was doing and told me this was his private cell number. He said If I had any questions later that night, to call him. He said he would leave his cell phone on all night and have it with him. I should call him no matter what time. That's nice. Meanwhile, both Oncologists had mentioned that they had not seen the CT scan, but had only been able to read the report. I offered to go pick up a disk from the Imaging place, thank goodness they were open till 9pm. When I picked up the disk, I also asked for a copy of the report. Back in the room, waiting for the US, Victoria, my soon to be an adult child, chose to watch Aladdin and I popped the disk into my laptop and read the report. It was somewhat surreal reading a report with the words "must be considered for metastatic disease" while Robin Williams was singing "Friend like me" I knew what my first wish would be.
She had the US done at 10pm. FINALLY, she could eat! The cafeteria was open till 2am YAY! I went in search of food for her. She wanted something warm, like a plain chicken breast with cheese. Easy, I thought. Nope. Again, for the fourth time that day I was wrong. They had nothing. NOTHING. Nada. Although the grill that was stll open had GF choices, they were only for people who want to avoid gluten. Everything had been cross contaminated. I looked in the refrigerated section. Even the salads already had croutons in them. I brought her a banana and a yogurt.
I spent the rest of the night until about 3am google-ing "Ovarian Cyst" and "Ovarian tumor". All her symptoms said cancer, and the reports said fluid filled sack. I realized why Dr. Aaron gave me his personal number. I kept thinking, if it's fluid filled, and not solid it has to be a cyst. Right?
At 1:15, Dr. Aaron called. "Where are you?" he asked. Strange, he's never asked me that before when he's called. "I'm home" "Where's Victoria?" "She's at school." "Good, he said, she can't hear us." Crap, I thought, this isn't good. He told me they found a mass against her uterus. Shit. A cyst? A tumor? "O.K." was all I managed to say. He also told me the swelling was very high, and there was fluid around her heart. He was sending her to an Oncologist at Banner Desert, and we had to be there by 3:30. He told me other doctors thought it was an ectopic pregnancy. He told them no, he knew this patient and she was NOT pregnant! So I called Randy to get Chloe from school, texted Tori that I was picking her up, and there was a knock on the door. I had scheduled all the carpets to be cleaned and the tile in the guest house to be steam cleaned. Great. I showed them in, told them I had to leave, took a shower, packed an overnight bag (as per Dr. Aaron's instructions), picked up Victoria and brought her home to pack a bag, handed my cc to the carpet cleaners and got to the Oncologist by 3:15. Wow.
Walking into the Oncologist's office I remembered "oh, yeah. Pediatrics." the office was decorated like a snack bar on a beach. No kidding. There was even a large boat built into the wall for the kids to play in. I got a kick out of the fact that my child, who, the week before, had been reminding me she's almost an adult, was now sitting in a waiting room designed for six year olds.
Dr. Smith was very nice, and quite calm. She asked Victoria a ton of questions and said she would have an ultrasound done. I really started to relax, and thought, it's probably just a cyst, we'll go home, and have an ultrasound at the imaging place tomorrow. Nope. She said she had already started to admit Victoria, and she just needed to check to see if the room was ready. OK. She told us her associate, Dr. Li would be following Victoria since he was at the hospital already. O.K. I mean, really, what do you say? By 4:30 we were in a room on the top floor of the Cardon Children's Medical Center at Banner Desert. Glad I packed a bag. Randy came to the hospital but had to leave at 7:30 to pick up Chloe and Jaytlin at practice. Dr. Aaron called me on my cell phone. He asked how she was doing and told me this was his private cell number. He said If I had any questions later that night, to call him. He said he would leave his cell phone on all night and have it with him. I should call him no matter what time. That's nice. Meanwhile, both Oncologists had mentioned that they had not seen the CT scan, but had only been able to read the report. I offered to go pick up a disk from the Imaging place, thank goodness they were open till 9pm. When I picked up the disk, I also asked for a copy of the report. Back in the room, waiting for the US, Victoria, my soon to be an adult child, chose to watch Aladdin and I popped the disk into my laptop and read the report. It was somewhat surreal reading a report with the words "must be considered for metastatic disease" while Robin Williams was singing "Friend like me" I knew what my first wish would be.
She had the US done at 10pm. FINALLY, she could eat! The cafeteria was open till 2am YAY! I went in search of food for her. She wanted something warm, like a plain chicken breast with cheese. Easy, I thought. Nope. Again, for the fourth time that day I was wrong. They had nothing. NOTHING. Nada. Although the grill that was stll open had GF choices, they were only for people who want to avoid gluten. Everything had been cross contaminated. I looked in the refrigerated section. Even the salads already had croutons in them. I brought her a banana and a yogurt.
I spent the rest of the night until about 3am google-ing "Ovarian Cyst" and "Ovarian tumor". All her symptoms said cancer, and the reports said fluid filled sack. I realized why Dr. Aaron gave me his personal number. I kept thinking, if it's fluid filled, and not solid it has to be a cyst. Right?
Valentine's Day 2015 was the beginning of our new journey
A friend said Tuesday was "Day 1" because of Victoria's surgery. I realized it was not. Day One was actually Valentine's Day, just over a month ago.
February 14th, 2015:
Our "new" kitchen had been complete enough for us to move back into. Yay! Living for two and a half months out of the guest house with the tiny kitchenette was getting to me. Yes, it was a blessing to have the guest house, and I am very appreciative to have it, but a completely remodeled kitchen in the main house was just heaven!
Moving Day!!
February 14th, 2015:
Our "new" kitchen had been complete enough for us to move back into. Yay! Living for two and a half months out of the guest house with the tiny kitchenette was getting to me. Yes, it was a blessing to have the guest house, and I am very appreciative to have it, but a completely remodeled kitchen in the main house was just heaven!
Moving Day!!
I noticed Victoria's belly that day and told her to lay off the potato chips. She was offended (rightly so, as it turns out) and insisted that she wasn't eating as poorly as I had accused. By Tuesday, she went to work out and she told me later that she felt uncomfortable and thought maybe something was up. Two days later, on Thursday, February 19th, she looked 7 months pregnant! She showed me how hard her upper belly was and told me it was hurting. Her pediatrician was out of town, but I made an appointment with him for Tuesday. That night the discomfort was worse so I took her to ER at Banner Gateway. They weighed her in kg, and she didn't do the mental math, so she didn't think about her actual weight. They took an x-ray of her upper abdomen (I didn't know it was only her upper abdomen) and took several blood tests. She wasn't pregnant, her enzymes were normal, and the x-ray was negative for blockages or distensions. The Dr. said it could be her gall bladder since that was the area of the most distension, but it was probably indigestion. He sent her home with a script for an antacid. Due to her chronic illness, it was a possibility but still didn't seem likely to me. Over the week end the situation continued to get worse. She was having a lot of difficulty sitting up and the pain/pressure was increasing. We had a Synchro meet that week end, and Victoria was having difficulty sitting to judge all day. By Monday she looked about 8 months pregnant. A friend of mine said, "Babies don't grow that fast!" when I told her what was going on. Thankfully, I had kept the appointment I had set with her pediatrician for Tuesday morning.
Wednesday, March 18, 2015
Kitchen Remodel
Thursday, February 26, 2015
Alex Boye and Mom's with Blogs!!
I just thought this was awesome, and then thought, Wait, I'm a mom with a blog! LOL
Maybe I'll accept the challenge and make my tiny corner of the web and make it count.
Sunday, July 08, 2012
Saturday, June 06, 2009
Thursday, May 07, 2009
School Projects
Rebecca
Tuesday, November 04, 2008
Saturday, November 01, 2008
Thursday, January 24, 2008
Well it's time to update my profile. When I created this blog three years ago I said I was a :
stay-at-home, rosary-making, Girl Scout troop leading, Catholic Mom of one very active little girl.
V. is still active, however she's not in scouts anymore. It was nice while it lasted, but I just couldn't keep doing the leader thing. I had never been a scout myself, so I really didn't know what I was doing. I still make rosaries, you can see them at www.rebeccasrosaries.com and I'm still Catholic. That, at least will never change. I still don't get paid for anything except the rosaries I sell, so I'm still considered a SAHM, although I'm never home anymore.
About 6 months ago I took over the Art and Environment Committee.
Here's a pic of our newest altar cloth:
Right now I'm avoiding thinking about Lent. Just kidding, almost everything is done, I just have to make sure everyone is going to show up to get it changed from Ordinary time. Other things have changed too, but I'll save those for another post.
stay-at-home, rosary-making, Girl Scout troop leading, Catholic Mom of one very active little girl.
V. is still active, however she's not in scouts anymore. It was nice while it lasted, but I just couldn't keep doing the leader thing. I had never been a scout myself, so I really didn't know what I was doing. I still make rosaries, you can see them at www.rebeccasrosaries.com and I'm still Catholic. That, at least will never change. I still don't get paid for anything except the rosaries I sell, so I'm still considered a SAHM, although I'm never home anymore.
About 6 months ago I took over the Art and Environment Committee.
Here's a pic of our newest altar cloth:
Right now I'm avoiding thinking about Lent. Just kidding, almost everything is done, I just have to make sure everyone is going to show up to get it changed from Ordinary time. Other things have changed too, but I'll save those for another post.
It's still here!
Wow, I really thought this blog was probably gone due to inactivity. I was amazed when I discovered it was still here. Wow. It took a while to get back onto my "dashboard" because I couldn't remember my user name. With a little persistence, I made it back on! Woo hoo!
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