Thursday, November 24, 2011


Happy Thanksgiving! 

Although this has been a year of why and what ifs, heartaches and uncertainties, we have a lot to be thankful for. 

For me, I am first and foremost thankful for my little girl and her amazing strength that is truly beyond her year. She has been such an inspiration this year, and I am so glad that she has such strength and can carry us with her on this journey. 

I am also thankful for our friends and family who have helped us throughout this crazy, insane, nut-so year. And of course the new friends and family who we have met along the way, who have helped in more ways than we could have ever dreamed possible. 

Last, but not least, I am thankful for the doctors, nurses, social workers, volunteers, and families who have worked so hard to help heal our family inside and out, physically and emotionally, individually and  together. There is so much more to fighting cancer than curing the disease. I feel that we couldn't do it alone, and that no one should ever have to fight on their own. 

We finally came home on Monday night. The week in the hospital was full of ups and downs. Saoirse had been doing better at the beginning of the week, but by the time we started her radiation, she was deteriorating quickly. She would keep her head down, and didn't want to be put down unless it was to sleep. We could see the tumors getting larger on her skull, and her eye was being pushed forward. ONe morning her eye was so swollen that she almost couldn't open it, and it was surrounded by a bruise that made it look like she had been in a schoolyard fight. She seemed to be having migraine like headaches, and didn't want to look up if there were lights on, and kept throwing up. She wanted so badly to eat, but she just couldn't keep things down without tons of pain medicine. Her MIBG showed the activity in her skull and also showed positive results in the bone marrow of her pelvis, legs and arms. Her disease had certainly progressed, and had not responded to her last round of chemotherapy. She is officially a relapse patient, and now it's a game of trying to get it stable and under control. There is still the possibility of cure, but the chances drop drastically when it comes back. But there are a lot of new therapies out there, and there are so many ways to keep her disease under control, and someday they will figure it out, so there is always hope. 
The first day of radiation was totally nerve wracking. The first day was full brain radiation, as the plan for the brain sparing would not be done so quickly (although the original estimate of Monday was moved up to Friday!). This was new territory to us, and I was nervous about how she would feel after. Surprisingly it didn't seem to phase her much. She was still feeling pretty awful and in tons of pain, and we were just trying to find something to make her more comfortable. Friday they stared the brain sparing plan, and even though the morning session was delayed to re-set the machine, things went pretty smoothly. The amount of time that she can't eat in between seems to be the hardest part of the twice a day radiation. We were worried about nutrition, so we talked to the nutritionist and she brought us some things that will help out. She has some juices that have added protein that count as clear liquids that Saoirse can drink in between sessions. This is a godsend since she spends the majority of the day not taking in any solid food. She also gave us some protein powder to add to her food, because all she wanted to eat was applesauce. By the end of Friday we were hoping that she would turn around for the weekend. WE were going to try and go home Saturday, but by the time it arrived, we weren't sure we wanted to take her home yet.
Saturday morning was still bad. Saoirse seemed to be in so much pain, and even the new pain medication didn't seem to be helping that much. I was worried that a tumor was pushing on her brain, causing her to throw up. The doctors were concerned that she had some swelling or even some fluid in her brain causing the increased pressure. They ordered a CT scan. Thankfully, it did not show any fluid, and there were no clots. It did show how much bigger the tumors had grown in a week, and that her brain was being irritated by the tumors on the underside of her skull. The doctors decided to change her steroid to one that would help reduce the swelling behind her eye as well as any swelling caused by the irritation. After one dose, Saoirse was like a new kid. She started smiling, and wanted to eat. She kept down her food, and she wanted ton interact with other people. She even wanted to walk down the hallway before bed. It was incredible. We had been so worried that she had taken a turn for the worst, but it seems that she was just having so much pressure from the swelling, that she couldn't overcome the pain. By Sunday, she was like herself. We spent a lot of time out and about, playing on the playground, running around the garden, and dancing to the juke box. She ate like a horse, and kept everything down. We were glad to have our baby back, and so glad to see that she was happy again. It makes it easier to fight for her. 
Monday we had the double radiation, and then we came home. We were so excited to go, that the day kind of went nuts. Mike had to get the house ready, so I had her by myself all morning. We did a lot of walking around, and we took a trip down to the garden and juke box to play. After her nap, however, she was upset about the fact that she couldn't eat anything. She was feeling so much better, and had spent so many days not eating much, that she was starving. While Mike took her to the evening radiation, I packed up our room. By the time they came back, everything was packed and all we had to do was sign paperwork. That paperwork took 2 hours to get to us! A combination of shift change, medicine changes, and computer problems made it so that we were there until 8:30 at night. It was so frustrating, but we were so glad to be going home. With the late arrival, Saoirse was starving, and she ate some dinner and played with her toys and the dog before going to bed at almost 10. It made it hard to get up the next day, but we managed somehow. Tuesday and Wednesday we traveled in as outpatient to have her radiation and chemo, but that's a story for another day. Right now, we are just glad to be home. 

Wednesday, November 16, 2011

The "What"...

We came into the ER over the weekend because Saoirse was throwing up, and not able to keep down much food or water, and some of her meds. We wanted to make sure her labs were ok, and get her a quick bolus of fluids to tide her over. They drew cultures, because that's what is standard, and looked at her labs. Her labs looked great, her blood pressure and heart rate were perfect, and she sounded fine. They thought it was probably just a little tummy bug and that it would go away soon. We brought her home that night, and hoped that the throwing up would stop the next day. 
The next morning she still wasn't herself. She kept down her food and her medicine, but she was very clingy and didn't want to be by herself. After a couple of hours she threw up again. Now I was nervous that she was having some sort of brain pressure causing the vomiting from the tumor sites that we now knew were in her skull. We put a call into the doctor, and they said to see how she did for a little while, and call if she threw up again. Lo and behold, she did, and we were just going to call when they called us. 
The ER called to inform us that her blood culture was growing something and that we had to come back in right away to start antibiotics. We were going to be admitted. We were relieved that we had an answer to her vomiting, and were glad to get antibiotics started. We were hoping to be in for a day or two at most, and then take her home before figuring out what to do next about her bad scan. 

Saoirse seemed to perk up over the first two days. That night, after getting meds and fluids, she ate some dinner and played before bed. The next day, she had a bit of a rough morning, but after some blood, she perked right up and went to play in the playroom and walk around the halls. She was having a blast until she ate too much for dinner, and got very sleepy. The only problem was that she was still throwing up at least once a day, usually at bedtime or first thing in the morning. No one had a good answer for why she was still feeling sick, and thought it would have more to do with her new tumor growth rather than the bug she was fighting. 

We started talking about the next step. Everyone agrees that radiation is the way to go to kick it down quickly, and hopefully get it back under control. Her MIBG scan is set for Thursday, so we will find out then if there is any minute activity in her body (as her CT of her body was normal), or if it truly is all localized to her skull. We are hoping for the latter, and keeping our fingers crossed. We started contacting the doctors at Sloan to see if we should be trying to get down there for radiation. We had already met with the radiation oncologist there, and felt like she might be able to do a better technique than what they typically do here in Boston. Also, they do radiation twice a day, where as here they only do it once a day. We planned on meeting with the radiation oncologist here, Dr. Marcus, just to see what the schedule would be like and what could be done the quickest, and the best way for Saoirse. Initially, Dr. Marcus didn't think that she would be able to start radiation even before Thanksgiving next week. To us this was not an option. We felt like it was urgent to at least get things rolling by the end of this week, and start radiation at the latest on Monday. With this information we decided that traveling to NY would be the best option, if they would be able to get her started sooner and get the radiation done twice a day, meaning it would all be finished sooner. 
However, a few hours later, Saoirse's team came in and asked if we wanted to start radiation planning the next morning. We were confused at this, because the last we had heard, there wasn't going to be a possibility of starting even before Thanksgiving, and we had kind of settled our minds on being transferred down to NY. They said that Dr. Marcus basically rearranged the entire schedule for the machine needed, and had gotten a team together to get her started with planning Wednesday, standard radiation Thursday and Friday, and brain sparing radiation as early as Monday. She had also arranged for her to receive two treatments per day, instead of the one that they usually do. This was astonishing to us, and we were just so shocked we didn't know what to do. We said that we would do her planning, so we didn't lose her spot, but we still wanted to talk to NY in the morning and see if it was really better to just stay here. 
Mike talked to the fellow in NY, as Dr. Wolden wouldn't be in until later, and got some answers, but not definitive ones. We went and did the planning, and learned about what exactly went on as far as the radiation, and talked about how quickly they were going to be able to set up all of the treatments and the brain sparing plan. It was truly amazing how much work they were doing in order to get it together for us. We were very humbled and appreciative. After speaking with them, we really felt like it would be best to stay where we are as long as the technique really was the same, and according to both Dr. Marcus and Dr. Wolden, it is the same technique. We decided we needed to stay here and get things done. What they are doing for us is amazing, and we are so very glad that they are able to work so quickly for Saoirse. It makes us feel like they understand how important it is, and how important it is to us to have her healthy as soon as possible. 

We can see the bumps on her head getting larger, and she has pressure behind her left eye. It is not a drastic as when she was first diagnosed, but it is definitely pushed out a bit. The veins in her head are going crazy, it seems like there are more of them each day, and that they are darker. I have asked about anti-angiogenics, but they will inhibit the effectiveness of radiation, so we can't use them yet. I hope to use them after. Her planning went smoothly and quickly, and we are set to start radiation tomorrow. She has an MIBG scan in the morning, which they are going to sedate her for because of how she is feeling, and the fact that they need a good scan. Then she will receive the first dose of radiation in the afternoon. She will have two rounds on Friday, and also on Monday through Wednesday next week. We will start chemo hopefully Friday, and hopefully be able to coordinate it so that we can go home over the weekend and just have the nurse come to run the half hour IV drug for the two days (the other drug is an oral). We will know more about that tomorrow. We just hope that the radiation starts to work quickly, and that she gets some relief right away. She is just so uncomfortable, and I wish I could take it all away. Fingers crossed. 

We will be starting some research on what to do if 1) the radiation doesn't work, and 2) if it does, where to go next. Now she will not qualify for some of the standard treatments, but in some ways we have more options because a lot of new treatments are used on relapse patients first. There are a couple of very promising ones, and a couple of really alternative (but still promising) ones that we are looking into. All in all, there are about 4 or 5 that we will be researching over the next couple of weeks. Hopefully we will find one that will be the perfect fit, and hopefully it will be a non toxic option. Fingers Double Crossed! 


Feelings you have when your child has cancer:













Questions you ask when your child has cancer:

Why her?

When will it end?

Why now?

What will happen?

What choice is best?

How could this happen?

Will she be ok?

Friday, November 11, 2011

Now What.....

Saoirse had a CT today. The results are not good. She has new lesions on her skull and her large tumor at the back of her head has grown. I am not sure where things go from here. We are still going to NY next week for further tests. We should know more Monday. Today is the first day I thought about the reality that she might die. The first day I let myself see the reality of her disease. Today I feel helpless, hopeless, and humbled. Today I have no answers - just questions, what ifs and uncertainty. Today I am weak, but she is strong - she makes me keep going. All I need is her smile. 

Tuesday, November 8, 2011


When asked to fix a problem, I am a believer in fixing it right the first time. Apparently when you are dealing with hospitals, this doesn't happen - a very dangerous combination! 

We came home last Sunday from a week of intense chemo. Monday, Saoirse had labs drawn by the home nurse, and I looked forward to seeing if her blood counts were doing ok. She still wasn't eating or drinking much, and she was sleeping lots (mostly because of the nausea meds and Benadryl). We knew this chemo would hit her harder than others, so my focus was on keeping her nausea at bay as best as possible, and getting whatever food I could into her. Mostly she drank a few ounces of formula, some oatmeal, maybe some crackers or goldfish, and water that we forced into her with a syringe. Not anywhere near the balanced diet or volume of food that she usually consumes. Monday, her counts were fine according to the nurse who called, hemoglobin up to 9 (from 7.8 in hospital on Sunday), and ANC was still 1200. I figured, "Great - we'll just keep trying to get her to eat, and worry about a transfusion for later this week." 
By Wednesday, we were concerned that she still was feeling so crappy and sleepy, and that she was still very very nauseous. We called the doctor, and checked in with her that morning, She was concerned that she might be getting a bit dehydrated, so she suggested going out to get some Pedialyte to get her hydrated and keep her electrolytes up. She also thought she could probably use a little IV hydration and most likely some blood, so she set up an appointment for us to come into clinic on Thursday morning and have everything done. That evening, when the home nurse stopped by to do a blood pressure (we called her because we were concerned), she mentioned to us that Saoirse's sodium had been below normal on Monday, and wondered if Jimmy Fund had said anything about watching her for dehydration. The Jimmy Fund nurse had not informed me of her below normal sodium when they called Monday, and had not said anything about making sure to keep her hydrated with something like Pedialyte. I still wasn't super concerned, since no one had said anything, but we did buy some Pedialyte that night, and we were glad we were going in to clinic the next morning. 
We arrived Thursday, with a pretty happy baby. She took her nausea meds without gaging, we got her in the car, and she didn't gag once on the whole ride into Boston. She drank and ate when we arrived, slowly but eagerly, and we were excited that she was showing interest in things like toys and curious george on the iPad. The nurse had pulled her labs when we arrived, and taken her vitals. Her blood pressure was low, but we knew that she was somewhat dehydrated, and they wanted to get her hooked up to hydration asap. We went out back, hooked up, Saoirse drank some more of her bottle, and settled in to watch some Curious George. That's when all hell broke loose. 

The nurse rushed back to our bed, saying that her sodium was dangerously low, and that she may have something called (ok, I can't remember it now, I'll get back to you on it), which is a side effect of the chemo and is worsened by additional sodium in the system - she went to turn off her fluid. The first thing out of my mouth was, "but she has no adrenal glands and doesn't regulate her own sodium. You know she has no adrenals, right?" She didn't!!!!!!! Strike one! 
After she left her hydration alone, a bunch of nurses and the RN rushed back and told us that we were going to be transfered to the ER. WHAT?! I immediately refused. I couldn't understand why they would need to move her just to give her saline boluses. It didn't make any sense what so ever. She was happy, smiling, eating; my kid was doing better than she had in days, and they wanted to send her to the ER and admit her to the ward? We just got out! We came in because we thought she would need blood and a little hydration boost! What on earth were they doing? I told them they could do whatever they needed to there in clinic, and if they needed to transfer her up to 6 later, that was fine. I was also confused at what the big deal with low sodium was. In my mind, she just needed to get some hydration in and bring up her sodium levels that way. They said that she was at risk for a seizure. 
Now the next part is a little bit of a blur, but basically it went like this:
The RN said that this was a big issue, and that in order to make sure that her levels were going in the right direction, we had to have labs drawn and analyzed often and quickly. This was the reasoning for the ER. When I asked her why we weren't alerted to the possible implications of her low salt levels on Monday, she said that her levels weren't low enough to be concerned about. I asked if this was shared with her endocrinologist on Monday, to make sure that nothing should be done, and she wasn't sure. She asked Dr. Shusterman (Saoirse's primary doctor) to come talk to us. HER SODIUM LEVEL WAS NEVER TOLD TO ME, NOR BROUGHT TO THE ATTENTION OF HER ENDOCRINOLOGIST!!! The reason given was that it was just below normal, and that it is usually a non issue. This is the point where I snapped. 
What started as a controlled, firm reprimand, turned into an all out, emotionally driven, screaming, lecture. I accused her doctors of not working to keep my child safe in my home, and only acting when the situation became so dire that hospitalization was needed. I also brought to their attention that their failure to pass along important lab chemistry information to her endocrinologist put her in severe danger that could have been avoided by a simple email or phone call, and an earlier intervention in the clinic. I also reminded them that we had a similar situation of non communication between departments during her last post-chemotherapy hospitalization, and that they had assured me then that every lab was going to be sent to her endocrin team, no matter what, for review. I then asked them why people taking care of Saoirse and her labs were not aware that she had no adrenal glands. I couldn't understand why it wasn't at the top of her chart, screaming at anyone reading it for either treatment or lab analysis. As far as I'm concerned, her chart should read:
Saoirse Fitzgerald
Adrenal Insufficiency - no glands
This should be known by anyone who has anything to do with any aspect of her care, no matter how small. This is worse than a peanut or drug allergy, this is missing organs! As far as I was concerned, the doctors had failed to do their job - they had failed to provide proper care for my child, and now she was left in a dangerous situation that should have never come about. The doctor "apologized" for not sending her labs to endocrin, and for not informing me of the issue, but I could tell from her tone, that she was not convinced that she did anything wrong, and that she knew she had "followed protocol." This infuriated me, and I couldn't handle it anymore. Strike two!
So they took Saoirse (and Mike) by ambulance from Jimmy Fund to the ER at Children's (Yes, they drove her in an ambulance approximately 500 to 1000 feet to the other side of the street). I refused to go with them, and walked over on my own (our social worker Judy came with me). I was there before they were checked into the department. The whole time in the ER was frustrating and, as far as I'm concerned, pointless. We supposedly were sent there because they could get labs done more quickly, but it seemed to take them longer to get anything and everything done. They also were not in contact with her regular teams, only the ones on call, so her medicines and treatment were not being coordinated with any sense of her true history or her current status. It was a complete disaster. We were able to contact and coordinate with her doctors faster than the ER team working with her. Also, her nurse changed like three times in the eight hours we were there (yes eight hours! we were supposed to be out of there in like three). And for some strange reason they wouldn't let her eat! This was the first day in over a week that she had been asking to eat something, and they were refusing to allow her too. They kept saying that it might raise her sodium too quickly. What did they think I was going to give her, a salt lick? I was going to give her hummus, milk and applesauce, not salt and vinegar potato chips. So after six hours of being there, having to check and recheck everything ourselves, having to try and get her to nap with the chaos all around, and after her begging for food for two hours, she spiked a fever, and they started treating her for an "infection." The whole situation had spun into a chaos that was so frustrating and angering that I never want to set foot in that ER again. Strike three! 

Saoirse's sodium levels were climbing up, she received a dose of antibiotics as a precaution, and we were admitted to the floor. Once we got up there, there was a lot of things happening to get settled, but all the nurses were working hard to get things organized as quickly as possible. The night went as well as expected and we started to regroup in the morning. I was still quite upset, but my focus was on getting Saoirse back to stable condition, and helping her feel better over all. She was having some diarrhea, and some painful urination, so I was concerned that there was an infection that stemmed from her being dehydrated for a few days. Some cultures were drawn, and Saoirse was put on precautions so that if she had an infection, it wouldn't be transferred to any of the other kids. The frustrating thing about precautions is that it confines her to her room (although by Saturday, the nurses became more lax as she was showing signs that she didn't have a transferable infection, and they allowed her to roam the hallways as long as we kept her out of the play and resource rooms). By Saturday her salt levels were back in the normal range, and we started asking about going home. The policy is that she can not leave until her ANC starts to climb, and the doctors did not think that that would happen anytime soon. We were left to battle about restrictions and circumstances and try and work to make sure that this didn't happen again, ever. 
We were allowed to leave for three hours on Sunday morning so that we could go to my Nana's 89th birthday party. Saoirse was so excited. She got to run around with her cousins, and she was glad to be with family and not stuck in the hospital. I think she felt normal for the first time in about a week and a half, and I was so excited to see her happy. She seemed a little distressed when we went back to the hospital after the party. She looked at me with a look that said," but mum, we just left. Why are we back here?" I was sad to have to bring her back to her room by herself, without being able to play with the other kids, or better yet, her own dog at home. She was feeling so good, and I hate having her in the hospital when she is feeling well. By Sunday afternoon I was done being there and done with the doctors treating her numbers and not Saoirse the person. I felt like we were getting lines and lies, and I didn't know who to trust or believe any longer. It is a horrible feeling to feel like you can't trust the doctors who are supposed to be treating your child for a life threatening disease. I think this is the most disappointing part of this whole ordeal. 
Saoirse's ANC came up on Monday morning, and we were allowed to go home. It took them hours to get her prescriptions ready, and I had to kind of keep on them, but I know they weren't expecting her to go home so soon, and they were a little unprepared. Saoirse was very excited to be home, and had fun chasing Fallon around the house until bed time. She has been taking her meds like a champ, and we are so proud of her for being so strong, and glad to have our happy baby at home with us again.

This is not the first time that Jimmy Fund has made a catastrophic mistake regarding Saoirse's care. The last time she spiked a fever in the clinic, they forgot to draw her blood cultures before they gave her IV antibiotics. Because of this, she was put on four or five different antibiotics (instead of one or two) because they wouldn't know if she had anything before antibiotics were administered. She was also sent home on IV antibiotics after that stay, and she suffered additional side effects from the ones she had been on in the hospital. We also had trouble with her oncology team not sending Saoirse's lab chemistries to her endocrinologists, and we spoke with them a couple of times on how important it is that all of her teams communicate regularly to coordinate her care at this crucial time in her treatment. I am a trusting person by nature, and I like to think that people will do what they say they will (especially doctor who are caring for a critically ill child). I also think that everyone can make a mistake. But mistakes must be learned from, and if the same mistake is repeated when it makes a difference in my child's health, there is absolutely no excuse. 
I have expressed my complaints and concerns with all of her teams, who are now putting more strict rules into place to keep her safe in the future. I have also spoken with the nurse manager for children's and will be speaking with the care coordinator at the Jimmy Fund about what happened and what need to be put in place system wide to make sure that a similar mistake doesn't happen with Saoirse or any other patient. 

Wednesday, November 2, 2011

Up and Up

Today I am feeling like Saoirse is very small because she is not feeling well and very much depending on me, but I keep thinking about how big she is getting and how quickly. There is something about the kids in the oncology department that has always struck a chord with me. No matter the child or their diagnosis, they always look older than they are. I have found myself thinking about how old a child might be, only to find out that he or she is much younger. It seems like Saoirse has been growing up faster than ever. Her expressions seem to be so far beyond her years, and she seems to have life pretty figured out for now. I've been working on trying to capture some of her more "big girl" moments, and sometimes the pictures surprise even me. One of the doctors at sloan made the comment that many of the kids she sees are more mature because the spend so much time in an adult dominated world. That could be the key to their mature faces, or it could be the bald heads. 

So in an effort to regain my baby's babyhood, I leave you with some bubbles!