Every day brings something new. So overnight Brynlee was still having a lot of trouble with her breathing. Respiratory has had to suction her out and pound on her for a lack of a better word. They did another chest x-ray and it appeared that she possibly had a blocked bronchiole and her left lung was collapsed. It was decided to send her back into the OR to clear out the block and to intubate. She really needed to be intubated again for the MRI scan that they want to do to check on the size of her tumor because they needed to sedate her to have her be absolutely still, and sedation can affect breathing, so it in my mind was just a matter of time before she was to be intubated again. The ENT docs did the procedure and gave us pictures and she clearly had a lot of blockage. So they cleared it all out and intubated her and she did wonderfully under anesthesia, which has been a concern. She is still sedated right now, but she is so much more comfortable.
When we got here this morning her oncologists were here and we had a discussion about everything that we know so far. Brynlee does have cancer essentially throughout her body, liver, lung, a couple of spots in her bones, and a little in her bone marrow; however, the doctor said that it was less than 5% affecting her bone marrow but that it was still being analyzed. She (the oncologist) did also say that she expected it to be in the bone marrow. As I already said the main things of concern at this point is to get her breathing stabilized. I am hoping that being back on the ventilator and intubated for a few days will help her to rest as she has just been too uncomfortable to rest. We are still waiting on the pathology from her biopsy so that we can get her exact staging and then get a course of action. If we don’t get those results today then we most likely will not get those until the end of next week because of how they schedule things. We did also talk about doing a laminectomy and removing the tumor if her MRI doesn’t show any shrinking of the tumor and decompression from her spinal cord. Again, we are trying to reverse the weakness in her legs and the paralysis that has occurred, so even though there is a risk of scoliosis by doing a laminotomy and decompression we could still preserve her function is the hope. With that said though, it is a major surgery which would come with its own complications. But we will cross that bridge if we come to that. Our hope is that the tumor is shrinking and we won’t have to go the back surgery route. She is scheduled for her MRI at 5 p.m., so hopefully that will stay the same and not change. We probably won’t have any information regarding it, however, until tomorrow.
So apparently I spelled doppelganger wrong, but we have a new doppelganger report. Her ENT surgeon looked like David Letterman with his hair net on, with it off, not so much.
9/2/2011 - After bronchoscopy and reintubation
I tried to update earlier but wasn’t able to get it posted, so I’m sure this post will reflect some of my frustrations. Brynlee has been having a hard time today and last night. She has been having a lot of trouble breathing. She was extubated yesterday and did fine for the first few hours but then had trouble and had to go on a nasal canula. Overnight she had more difficulties and is now on a BiPAP. She seems to be pretty uncomfortable today. We don’t feel like we are getting much of any good news today, so it’s been a hard night and day. Yesterday she had a hearing test, EKG, and echo. All of these seemed to be fine. We spoke to her oncologist last night and confirmed that she does have stage 4 cancer because it is in her liver and lungs. This cancer is staged differently from adult cancer, so stage 4 could still be considered intermediate risk, but we have to wait until we get the biopsy studies finalized before we have the information regarding her exact staging. If you want more information about neuroblastoma and the staging and risk groups go to the American Cancer Society website (at least that is what the social worker told me). Intermediate-risk has a 5-year survival rate of 85-90% but only a 30% survival rate if it is staged as high-risk. Quite the drop isn’t it? Today she has had a bone scan and is now going to have an ultrasound because they found a clot in her neck. They have also ordered another MRI of the thoracic spine to see if the tumor has come down any in size, but I do not know if that has a scheduled time yet. She doesn’t seem as puffy and swollen today, but we sure do need her breathing to improve. She had her last chemo treatment last night, and we were told that she will have those again in two-and-a-half weeks.
We did have Kaitlyn and Marissa come yesterday to see Brynlee. They were able to meet with the Child Life person and receive their sick baby dolls and now they get to take care of them at home. It was also my birthday yesterday and so we went out to dinner with my dad and the girls because I thought that we needed to do something that was more normal for a change. It was hard. I don’t want to go out and celebrate when Brynlee is in the hospital. She should have been there with us. There is no way around it, but yesterday sucked, and today is very trying as well.
My mind is blank whether or not there is anything else to say right now. Again, we will update as we have information to share, so don’t worry if the posts become more sporadic – it just means we don’t have anything new, but I will still try to get something up once a day.
I am going to try and post some pictures. If scary tubes and medical pictures scare you then you probably don't want to look.
9/1/2011 - BiPap
9/1/2011 - Posters from Kaitlyn
9/1/2011 - Kaitlyn with her sick doll
There is not really much to update at this time. But here is what is going on at the moment.
Brynlee is currently off all sedation and hasn't had any morphine since this morning. When I got here she was awake and alert and just looking at me with her big blue eyes. Shortly after we headed to the CT scan for a contrast dye scan of her neck and her abdomen. She was moving to much so we had to sedate, but she woke up quicky afterwards. She won a new blanket today from Bingo (no, she didn't play, not sure how that works). It is a cute froggy blanket. So the big hope for today is that she will come off of the ventilator. We don't anticipate any surgery at this time and her major scans (MRI) where she has to be absolutely still are done for now, so we don't really need to sedate. She is on a trial now with the ventilator off right now and is doing great, so hopefully we can get her off if the trial continues to do well. Once she gets off of the ventilator we can hold her and we will be able to start feeding her through the NJ tube. We are still awaiting a bone scan, a metabollic scan (which can't take place until next week because they need some isotope that had to be ordered), and a hearing test because they have to get a baseline as chemo can affect her hearing. They are watching her blood work closely because of the effects of all of her drugs. She had her second chemo treatment last night. The nurse said she slept well last night and has been doing great. We are hoping to have a consult with oncology on the results of the tests that have been done so far, but I'm waiting until Blair gets here before we do that.
Otherwise, we are doing fine. Brynlee is puffy and swollen, but that is to be expected with all of the fluid and the drugs. She is going to probably lose her hair, which come on, I finally get a baby with a lot of hair and now it is gone. :-P. We are hoping to be going out of the PICU in the next few days and being moved to the oncology floor. We are grateful for all of your love and prayers on our behalf. It is not an easy thing to go through, but I know I definitely feel peace and comfort and am ready to fight this. I have felt the presence of angels ministering to us and our little Brynlee - as weird as that may sound, that is the only way I can describe it.
To lighten the mood here is our current doppleganger report. Now a doppleganger is a lookalike of someone you know. I believe it is a German word. So here we go:
The oncology fellow that is taking care of Brynlee during the day looks like our neighbor, Aaron Nydeggar, and he also has a lot of the same mannerisms. Next, one of her nurses looks like a girl I used to work with, Becky Manwaring. And finally, Blair's flight attendant on his flight home Sunday looked like our neighbor, Amy Garduno. Hopefully we can have some more dopplegangers because we are finding anything we can at this point humerous that distracts us.
Thanks again. I can't express enough our gratitude.
Tuesday, August 30, 2011
On Thursday, August 25, 2011, I realized that Brynlee wasn't rolling around on the floor anymore. Up to this point she was rolling all over and sitting up mostly by herself unless she was interested in reaching something. I became aware that she wasn't moving her legs and didn't quite know what to do but just watched it. By Saturday her legs seemed weak and lifeless and she refused to eat her baby food. By Sunday morning she was refusing her bottle and her breathing seemed labored. Saturday night I knew I needed to take her to the hospital, so I woke up Sunday and left a message for her pediatrician because I wasn't sure if I could take her straight to Primary Children's. Blair had been in California since Wednesday for work but was scheduled to be home later on Sunday. While I waited for Dr. Hoagland to call me back I arranged for our neighbors to take care of Kaitlyn and Marissa. He called me back and confirmed to go to Primary Children's and then we were off.
We spent most of the day in the emergency room. The initial presentation led the neurogolists to believe that it was infantile botulism, which is present in Utah. However, an EMG/NCV was ordered. The second neurologist conducted the study and didn't find anything to indicate botulism, but didn't really feel it was Guillane Barre or SMA. They also did a spinal tap. Everyone was puzzled. So it was decided to admit her to the PICU because of her breathing difficulties and order an MRI. We were moved to the PICU about 6 p.m. By this time Blair and my parents were here. A chest x-ray was done and we left around 9 p.m.
I arrived at the hospital the next morning and was greeted by the neurologist who said her protein in her spinal tap was high, which can be an indicator of Guillane Barre, which is an autoimmune disorder that attacks the nerves. Guillane Barre can also be seen on an MRI of the spine, so that was the next step. However, the nurse mentioned to me that a CT scan had been done that morning, so I asked the neurologist about the CT scan, and she said she didn't know one had been done. She went to investigate and came back to inform me that there was a mediastinal mass or tumor in Brynlee's chest. It appeared to be invading her right lung space as well as compressing into her spinal cord and compressing her trachea. I was told it was a large mass, which i was assured was not necessarily a good or a bad thing. They suspected a neuroblastoma but were ordering a biopsy and MRI to get staging and specific biology about the mass. Talk about my world changing. I went from thinking about a longterm treatment course for Guilanne Barre to cancer. Shock does not describe things. Suddenly nothing else in the world mattered.
I then left the room and went to call Blair as he was home with Marissa and told him the news. How I talked to him I don't know because at that moment I couldn't talk and the rest of the day I didn't want to talk to anyone. However, plenty of doctors and people bugged us all day to ensure I had to talk to a lot of people, but I guess constant information is a good thing. Blair did come to the hospital shortly after.
Things got switched around several times as far as the biopsy and MRI, but finally about 5:30 or 6:00 on Monday, August 29, 2011, she was taken to the OR to have a biopsy, a central line placed, another spinal tap, and a bone marrow study. We finally were able to see her at about 9:30. They had to put her on a ventilator because of the concern about her breathing and the effects from sedation. She did great during surgery and even opened her eyes once or twice before we left. Her pediatrician, Dr. Hoagland, also came and visited us that night. They also administered her first dose of chemotherapy last night.
She had an MRI study this morning, Tuesday, August 30, 2011. I haven't gotten the official on everything but there was compression on her spinal cord, they are fairly confident on the neuroblastoma diagnosis, and there weren't any masses in the brain, but something about her lining being thickened, which they said could possibly mean nothing.
Right now Brynlee has tubes and cords coming out of every end of her body. She is on the ventilator. She has the central line placed, which is how they administer her chemo. She has a chest tube to allow for draining of any fluid or gas from where they did the biopsy surgery. She has a Foley catheter because she was retaining urine yesterday, and we also have to watch her urine output because of the side effects of chemotherapy. She is also hooked up to the heart monitor and such things as that. She does open her eyes now and then and looks at me, but overall she is resting comfortably. They have her sedated with Fentanyl. She also has an NG tube in her nose for feedings, but she hasn't been able to have any feedings because of surgery and the possibility of aspiration and who knows what else.
From here...we have lots of more testing and studies, bone scan, some other thing I don't remember next week, more chemo, more CT scans, etc. I have been reassured over and over that childhood cancers are much different from adult and are usually much more curable. However, every cancer is different. They look at all of the factors and depending on what all of the factors are depends on what course of treatment they pursue, but they kind of already have these treatments predetermined based on what all of her tests show if that makes any sense.
Things change every minute, as I type they are taking out her chest tube. Yay! That means not enough drainage to leave it in, which is a good thing. Now they are doing an EKG. Never a dull moment.
So here is everything I can think of at the moment. We appreciate all of the prayers on our behalf. We appreciate everyone's willingness to help. We can have visitors, but we don't want to be overwhelmed. I am still dealing with my own emotions, and I don't need to deal with yours too if that makes sense. If you want to visit, just let us know. A lot of it will depend on what is going on that day and what mood we are in. We love you, but Brynlee is the center of our universe right now and we are trying to find a balance between it all. I hope you understand. Oh, no kid visitors and only one or two are allowed and we have to be here with you.
My dad is here now to help take care of Kaitlyn and Marissa and will be taking them to Idaho this weekend. My mom will come back with them and stay next week, so we are good with the girls being taken care of at the moment.
Thank you again! I will update as we have something to update about.
8/28/2011 - Brynlee in the ER
8/28/2011 - Brynlee resting in the PICU
8/29/2011 - Brynlee and Blair before surgery
8/29/2011 - Brynlee immediately after surgery
8/30/2011 - Brynlee the morning after surgery
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