This post is going to be long. Really, really long. Zaida was in the hospital for 8 days, and I didn't have my computer, so I posted updates on my facebook page. Here I have copied/pasted the entire 8 days, in chronological order. It's a roller coaster ride, and nothing is certain, even now. You might pace yourself! Thank you for listening!
May 16 at 10:16pm
Denver on a Saturday night! Actually, I'm in the ER with Zaida again. She had a fever of 102.9, sore arms and legs, sore armpit, and swelling in her chest.
We were here last week with fever and swelling in her chest and they determined some lymph nodes were enlarged, and Dr. Clark thought it was an infection of her gj tube and/or incision from surgery. Zaida got new antibiotics and the pain and swelling went down after 3 days (and the doc said to continue the course for a full 14 days), but now she is sore everywhere again and the swollen area is back, though a little higher on her chest.
We think everything is pointing to some type of infection or illness, and not cancer (which we don't think would present this way). I am really have a hard time. I feel this oppressive weight on my shoulders. My strength is slipping and I'm seriously going to lose my shit someday!
May 17 at 10:48am
Our view from Rocky Mountain Hospital for Children. Zaida is still the same: feverish, achy, tired...She's on a couple antibiotics, Tylenol, and her usual meds. Her labs were good last night. We'll see the doc at some point today, and the GI doc about her tube, which has been leaking a lot lately, and is another painful spot. The ER doc last night agrees that she is probably fighting off something, a possibly run-of-the-mill illness, that is hard for her because of her past spleen removal.
May 18 at 8:37pm
Zaida refused to grant me permission to post our selfie, so here I am with my sunshine! Trying to look on the bright side while still in the hospital!
Zaida had a gastric emptying study today that found her stomach is processing too slowly. It's moving (not blocked), but it's slow to digest. It's probably related to the surgery on April 2nd, and is contributing to her appetite problems. The doc we saw today is going to talk to the GI people and the surgery people about it, and also to see if we can solve the leaky tube problem and the resulting irritated skin.
The doc discussed her symptoms with me. He agreed that it does not seem to be cancer. Cancer doesn't come and go or feel painful to the touch, like the swollen area on her chest, and otherwise doesn't present like this. However, Zaida's symptoms don't follow a logical path of infection (with the swelling from May 6th going down with antibiotics and coming back a week later just north of before). It could be a bacterial infection, even if nothing grows on the blood cultures, which they have been drawing from day one. It is truly puzzling. The doc scheduled an MRI for tomorrow afternoon to provide more information.
We are hoping it's a simple infection that is causing such grief, due to her medical history. (I have a feeling we'll never know for sure.) I am, of course, terrified it is something worse (more cancer), but I am using my extensive array of logic to dismiss my fears. I always could relate to Lieutenant Commander Data!
May 20 at 4:17pm
I spoke with the doctor today (Dr. Zimbelman) about Zaida's MRI from yesterday. The abdomen looks really good - there's nothing concerning there, thankfully. There are a few spots in the right chest area that were there in February that are about the same size. I don't remember anyone being very concerned about them. It's really confusing. The doctors at MD Anderson did not think that there was any cancer in the chest area. At April's surgery, Zaida did have tumor that was underneath the right diaphragm that had poked through into the chest, so I feel the chest had been breached and having all this going on in the right chest is so worrisome for me. However, if those areas in her chest were cancer, I think they would have grown more in 3 months (just me guessing).
She also has an area above her left diaphragm that appears to be loculated fluid. They'll have to monitor that.
The spot that we're most concerned with is the swelling on her chest that has come and gone, the past 2 weeks, with antibiotics (whether or not the antibiotics are making the swelling go down is unknown; it may be a coincidence or maybe there is an infection that the antibiotics are fighting). The swelling on her chest measures about 4-5 centimeters around. They can't tell from the MRI if it is an infection of some sort or if it's tumor. The doctor and I sat down with the radiologist, who was concerned the mass was tumor. The doctor still doesn't think that cancer would present this way because cancer doesn't come and go, and it doesn't respond to antibiotics, and it wouldn't be tender and painful to the touch. Dr. Zimbelman said, "Cancer is a one way train." If it was cancer, it wouldn't shrink, with or without antibiotics. Sorry if I sound like a broken record! It helps to talk (or write) it out!
Zaida will be getting her 3rd dose of vinorelbine this afternoon, as scheduled (weekly). We still don't know if it's working; it's too soon to tell. The doc doesn't want to draw another CA-125 yet. Because of everthing else going on with her, she thinks the results would be all over the place.
The doc decided Zaida should get a chest CT, which may provide more information on what the swelling might be and where it is from. We finished the CT this afternoon and I'm hoping for results tonight. The doc has also ordered a biopsy of the swollen area tomorrow. They will certainly be able to see if it's cancer then, and also test for viruses, bacteria, or fungal infections. Lets hope she has an infection, any kind, I don't care, as long as it isn't cancer! Zaida is definitely baffling to doctors, and she doesn't follow a normal or predictable path. She's special, but I wouldn't recommend this kind of special!
A word of advice, if your kid has cancer, do not buy a plane ticket to go somewhere for fun, by yourself. I'm so sad to miss my nephew's wedding this weekend!
I haven't been outside for 4 days, or gotten a good night's sleep, or eaten a good meal, for 4 days. I know I need to think positively, and be grateful. I'm trying, but it's hard! Thank you to everyone writing messages of love and support. I would be (more of) a mess without you!
May 20 at 7:37pm
I spoke with Dr. Zimbelman on the phone about Zaida's chest CT. There was nothing new that's worrisome.
They confirmed the area above the left diaphragm is indeed loculated fluid, not tumor.
The swollen area on her chest has a central part that is "necrotic, with a rind around it." The radiologist who read yesterday's MRI, and was very concerned it was tumor (not infection), now concedes that, oh, it COULD be an infection! Based on how it looks, he says it could go either way. Dr. Zimbelman truly feels it is an infection, and could be a "strange" one. She said it doesn't look classic for another type of tumor, either. This is good news!
We're still getting a biopsy tomorrow, at 7:30 AM. We may have a sense of what it is tomorrow, but we might not know for sure if it's cancer until late tomorrow or Friday.
Also, one of the areas in the chest, by the diaphragm, looks like an "inflammatory thing," so at least that is something we might not have to worry about!
All in all, I feel better about things! We'll see what happens tomorrow. I'm hoping to be home this weekend...
May 21 at 3:26pm
Zaida had the biopsy (needle aspiration) this morning of the swelling in her chest. The procedure went fine and she's recovered without problems.
The doc that did the biopsy said the mass is not an infection. If it was, they would see fluid and debris under the microscope. They saw cells under the microscope. We don't know what kind of cells, though, and we won't know until tomorrow. The doc was planning to drain it if it was infection, but it turns out to be "solid," not liquid. He took 7 core samples.
The oncology doc came to talk with me, and reiterated that the pathology will take time. Pathology has to stain them in different ways (I'm not sure exactly) and wait to examine them to see what type of cells are there. He said he looked at the scans and could not make any determinations either. He said if he had a strong feeling about what's going on, he would tell me. We just need to wait.
We don't think this means she couldn't have an infection elsewhere in her body that could be causing her symptoms. We also think that there was no indication of this mass on the MRI she got at MD Anderson on March 31st, and the cancer would not have grown so big in less than 2 months. Zaida's cancer has never grown that fast.
Our speculating has grown very tiresome. We will wait for real answers.
I'm not the type to assume everything is okay until told otherwise. A part of me does this, to survive, but a bigger part is preparing for the worst. If this makes me a negative person, a complete pessimist, then that's what I am.
If you find yourself with a tiny little girl, who is 10 years old and going to middle school next year, and you don't know how long her body will continue to fight, and if you find a way to be positive, let go, believe all your rationalizations, and embrace all that sucks about cancer...well you let me know. I'll have what you're having.
May 22 at 8:09pm
Where do I start? Dr. van Doorninck came in earlier and said they did not have definitive pathology yet. He did say that the preliminary pathology showed that the biopsied cells did not resemble the previous cancer cells that Zaida had in her abdomen. It was very preliminary, but it was good news. We would not get any final pathology results (cancer or not?) until Tuesday, partly because of the weekend.
BUT...He came back later to report that some of the cells stained like epithelial cells, the same cell type as her cancer cells. He says they cannot say anything for sure - at all - until they get a bigger sample. Regardless of what they do until Tuesday, they will not have conclusive answers. (He was really pressing pathology for an answer.) They want to do a surgical (as opposed to a needle) biopsy on Wednesday.
Dr. van Doorninck was very "concerned" about the epithelial cell type, as this could mean the cancer is in her chest, but he says we cannot know for sure yet. There are other epithelial cell types in the body. He mentioned the thymus, though he wouldn't expect thymus cells to be there. He explained the plan that is outlined below. After he left, I did some research and found that epithelial cells line the abdominal cavity, the chest cavity, and most organs, they are in ducts, glands, sensory receptors (skin, tastebuds, eyes, etc.), female reproductive organs, lungs, and capillaries. They are kind of all over. Why would it be so odd to find them in Zaida's chest? I don't know. I'm not a doctor. We just hope they are not her cancer cells.
Here is the plan, until biopsy surgery on Wednesday:
For right now, we're going to be treating Zaida as if she has an infection. We might be able to go home Saturday on IV antibiotics. They are going to stop one of her antibiotics (ceftavidime) for about a day, and if she continues to not have a fever, then we will be clear to go home on the other IV antibiotic (vancomycin). She has been on both since we got here. She'll be on vancomycin 3 times a day for a few weeks. It will be up to the infectious disease doctor how that plays out.
It's possible that she has a staph infection. She had a partial response on a different antibiotic (keflex) and that supports the theory that she may have a staph infection. It could be from the surgery or could be from her g-tube site. It's impossible to say and we may never know.
If this is truly an infection, it might be connected to the loculated fluid that is under her left lung. We are going to track whether or not this is working with physical examination and MRI at some point.
So for now, we are treating this as an infection and waiting until next week's biopsy to get a definitive answer.
May 25 at 9:39 am
Zaida got released from the hospital last night! It is great to be home! She would have been released on Saturday, but she ended up getting a fever the night before. We've been joking that if the criteria for going home is to NOT have a fever for 24 hours, then we would NEVER go home! I spoke with Dr. van Doorninck on Saturday morning about this, the fact that Zaida gets a fever every, single evening, and is otherwise doing fine. He stopped and thought about it, and said the point was very well taken, and it sounded like we could go home despite the fever (which she got whether she was on both antibiotics, or just one), after he talked with the infectious disease doctor and made a plan. As it turned out, she did NOT get a fever Saturday night, but even if she did, we still would have been released on Sunday.
We've decided to NOT do the surgical biopsy on Wednesday. We want to have the doctor consult with Zaida's MD Anderson surgeon, Dr. Hayes-Jordan, first. They will send all the reports, pathology, scan images, etc. this week. We want to make sure we do the right thing, and the right type of biopsy. There is no immediacy, and waiting another week for a biopsy is fine. For all we know, Dr. Hayes-Jordan will think she should do the surgery.
There are 2 areas of concern. The first is the area of loculated fluid under her left lung. It is not a tumor, but we don't know what the fluid is and what is floating around in it.
The other is the "chain of lymph nodes" that are swelling and receding. I certainly have been confused by the information provided about this. The needle biopsy doctor took me aside right after the procedure and told me that the "mass" was solid cells, not liquid. He would have drained it if it was liquid, and it may have been if it was an infection. It wasn't. He took 7 core samples. Now, the oncology doctor (Dr. van Doorninck) is saying that if we take a surgical biopsy, the center may "spill" around, and that isn't good. He said the lymph node is liquid in the center, the part that is necrotic and had been sent out to run cultures, and the rind around it is the solid part that they are staining to determine the cell types. This rind was where they found the epithelial cells that are so concerning. They were able to "aspirate" some of the center (not drain), so I think there is some question on the actual viscosity of this center part.
There are 2 ways to biopsy. The first is to go in and get a wedge, all the way from the edge to the middle. This is where they are concerned the liquid center will "spill." Anyone else thinking of Queen Anne's Cordial Cherries? Mmm. The second way is to take out the whole lymph node, which is a much more involved and complicated surgery. The node is near the middle of her chest, under the rib cage, and near the heart, lung, and important arteries (or veins, I don't know). The doc said the surgeon would go in through her right side (I have no idea how this would work), and that he would have to defer to whatever the surgeon thought. We'll have to grill her with all our questions.
1 - Zaida is on IV vancomycin every 8 hours at home, along with another antibiotic (oral cefdinir twice a day) for about 2 weeks, on top of a shit load of other meds (I kid; she's on about 12 things).
2 - She'll get her chemo (vinorelbine) this week on Wednesday, as usual. The home health care company will come to the house to draw labs on Tuesday, then come administer chemo on Wednesday.
3 - Dr. Hayes-Jordan will be consulted this week and we will wait to hear what she thinks.
4 - The pathology from the needle biopsy will be finalized on Tuesday, and Dr. van Doorninck predicts something like: Lymphoid tissue including cells that stain positive for cytokeratin, suspicious for metastatic disease (based on history of peritoneal cancer). Dr. van Doorninck emphasizes that we need more information, that we are still in fact-finding mode.
5 - The following week (June 2nd) Zaida has an appointment to see Dr. Clark (who we haven't seen the past 8 days, though she's been kept up-to-date about Zaida), and get labs and chemo. We'll also try to see the surgeon and the infections disease doctor on the same day and try to make some decisions.
The uncertainty is the hardest part!