baby emily

September 28

We were able to touch base with Dr.Chi on Friday night to discuss the plan. We will be doing a round of high-dose chemo, which includes an intense amount of Methotrexate. This chemo cannot be given after radiation because it can cause neurological deficits. We will give the chemo two rounds to work. Emily will be getting an MRI after each round to see how the tumor responds to the high dose Methotrexate.

Another advantage of trying the chemo is that we will also be trying to harvest stem cells. You may recall we did not get what we needed the last time we tried, so this gives us two more chances to harvest cells. These cells may be used if Emily goes to transplant. In order to do this Emily will need another double-lumen put in this week, which will require another surgery. The plan is to get the double-lumen placed and then start the the high dose chemo round on the same day. We don't know when this will take place but it will probably be this week.

Surgery and radiation are still on the table but we want Emily to be as close to three as possible before doing radiation. Surgery can debulk the ATRT cells which can cause spreading. We feel like this is a very measured approach. We have options and as long as this tumor stays localized, which means it doesn't spread, it is much easier to treat.

In other news, we have been enjoying our time at home very much. Our little apartment in Brookline feels like a vacation. It is so nice to have a place to call our own. We know we are approaching a difficult time and this week at home has allowed us to recharge for the next challenge. Thank you for all your extra prayers and support the past couple of weeks; we couldn't be doing this without you!

September 23

Thank you all for all your support. It means a great deal, especially when we get news like we did last week. Not much has changed since our last post and no plan has been formally organized but we are doing the testing needed to make the best possible decision. Emily had a lumbar puncture done on Monday afternoon to obtain a sample of spinal fluid, which was examined for the presence of tumor cells. They want to see if the tumor regrowth that was located in the last MRI was an isolated incident or is metastisizing(spreading). We should be getting the results sometime tomorrow.

If it is determined that there are tumor cells present in her spinal fluid then they will, probably, give Emily a heavy dose of intrathecal(directly into her spinal fluid) chemotherapy drugs she hasn't been exposed to yet. The goal would be to clear her spinal fluid first and then deal with the regrowth second.

If it is determined that there are NO tumor cells present in her spinal fluid then they will, most likely, resect the tumor. The neurosurgeons have to meet with the entire team to determine if another resection is the best course of action. If they resect, radiation and more chemotherapy will follow. Emily will be a major topic of conversation during Thursday's tumor board meeting. For those of you who aren't familiar with tumor board, it is a meeing of doctors from different specialities who review a patient's CT scans, MRI scans, spinal fluid results, and chemotherapy reaction history. Together, the group then decides upon the best course of treatment. We should know the treatment plan sometime Thursday.

In other news we were allowed to go home to our little studio apartment in Coolidge Corner on Monday. Emily hasn't seized since last week and has been in great spirits so we were discharged yesterday. We had a great family night consisting of a pizza from Upper Crust, the movie Meet the Parents, and Emily thankfully slept like a champ. It was very relaxing and much needed. Thanks again for all your thoughts and prayers and we will let you know the plan and the results when we get them. Take care!

September 19

Hi everyone. Katie and Brian asked me to update all of you on the events of today. As you know, Emily has been having seizures since last Saturday night. The doctors and nurses have been trying to get them under control and be sure Emily is receiving the correct dosage of medications in order to stop them. Emily had her first restful night last night since Saturday. Thankfully she didn't have any seizures and was able to sleep soundly. Emily had an MRI scheduled for this morning and her Dad was able to fly up to Boston early to be there for it. The results of the MRI came back this afternoon and it was discovered that Emily has new tumor growth. A one inch by one-half inch tumor has grown in the same spot where the first tumor originated. As you know, Emily just had a clean MRI scan only about 5 weeks ago which gives you an idea of the aggressiveness of AT/RT. The tumor is in the spot where the first one started, the posterior fossa, which is an area that would allow for an easy resection. The MRI showed that her spine is clear of any tumors.

At this point all options are on the table. The wonderful doctors in Boston will review the MRI and decide on the best course of action. They might decide to try different chemo meds, radiation, etc. but we won't know the plan until next week when they have had a chance to look everything over and discuss the options with all of the doctors.

It was determined that the tumor probably wasn't causing the seizures that Emily was having. Hopefully they have been able to get these under control or will in the next couple of days. The seizures were somewhat of a blessing in that they prompted the doctors to order another MRI scan which wouldn't have happened without them.

I will keep you all updated as we learn more. As always, we appreciate so much your love and support. Please keep Emily, Katie and Brian in your prayers as they fight this next battle. It means so much to our whole family to know that thousands of prayers are being said for them. Thank you.

Love,
Christie

September 17

We apologize for being a little distracted over the last few days but its been a busy week. Emily had her port-o-cath placed on Monday. The surgery went well and she was in great spirits later on that day. Emily was a little sleepy from the anestesia and we were thinking that it would be a quiet night. Around 3am Emily had another seizure. Our nurse Liz quickly gave Emily some other anti-seizure meds directly into her system via the port-o-cath and they quickly subsided. The seizures continued the next day with less frequency and intensity than the night before. We can only assume that the increased keppra levels were the reason. Tuesday afternoon Emily was doing well again, she was smiling and having fun with Katie's newest toy, a 9North gift from Jacky, a bright red voice recorder and amplifier. Emily was particularly chatty and Katie would record her voice and then play it back to her. Emily loved talking to herself, we think she was a little confused at first but she was having a blast! 9 North is an amazing place. The kids are sick, the parents are stressed out, and yet this amazing group of nurses keep everyone feeling good. They are so dedicated, caring, and fun.

Last night Emily had more seizures, they were even less intense than the previous night but still alarming. Cheryle, Katie's mom flew in to help out. We thought she would be helping us get into the apartment for the first time but things change fast and her help is truly appreciated! She'll be there until Friday. Today the team decided that they were going to do a lumbar puncture of Emily's CSF to determine if she has meningitis. Meningitis can cause an inflammation in the area surrounding her brain and brain stem which can produce seizures in some rare cases. They also scheduled an EEG to determine the severity and frequency of her seizures. She will have the electrodes on her head for 24-36 hours and they hope to be able to better characterize her seizures. Within the first couple of hours Emily had a number of minor seizures that they tracked. It appears as though Emily's seizures actually slow down her brain activity. The EEG allows us to better understand the nature of her seizures so we can plan treatments for when they recur. This information is very important but it doesn't tell us why she is having the seizures.

The team also decided to schedule an MRI for friday morning to rule out any new growths as being a potential source of the seizures. As you know they already have a CT scan from this Saturday but the CT scan, while being an excellent way to see pressure changes, can't really determine tiny new growths. That's where the MRI comes in. Even though we are exstatic with how proactive they are being with the seizures there is still a strong possibility that this is still a dose issue. Emily's Keppra levels are still low. Her Keppra levels are on the rise but they are still far lower than a few months ago and this may still be the cause of her current seizures. We should know more in the next two days when we get her CSF results back, her blood cultures back, and a clearer idea of the nature of her seizures from the EEG. Thank you all for your support and we'll keep you posted. Thanks for everything, we couldn't do this without your support.

September 14

Emily was having a wonderful Saturday with her daddy. She was smiling, mingling with her friend, Avalanna (see picture), and even visited the garden! Around 10 PM we noticed that the IV in her foot was bothering her and had started leaking. Emily’s nurse, Kelly, took the IV out when we realized her foot was trembling.

We thought it was just pain, but boy were we wrong! About fifteen to twenty minutes later her foot began trembling again, but continued into a full-blown seizure. Normally with her seizures, Emily receives a large dose of ativan through her central line which quickly stops the seizure. The ICU transport team was called in to try put in an IV so that Emily could receive the ant seizure meds she needed. The IV team worked for two long hours trying to get access, and throughout that time Emily continued to have periods of seizure activity. Kelly and Amy gave Emily three IM shot of ativan, which is a large needle directly in the muscle of her leg. Not fun. At about two in the morning the IV team was successful with the placement of an IV in her right arm and Emily received a dose of phosphenytoin which stopped the seizures. She was immediately taken for a CT scan and then to the ICU because of the breathing problems she had during the seizure activity. We were trying to think of all the possible reasons for these seizures. Was there an electrolyte imbalance? Was there new tumor growth? Was there some kind of bleed in her brain? The CT scan results came back almost as soon as we arrived in the ICU. No changes since the last CT scan. No pressure changes and no new bleeds. Thank God. The electrolyte results came back this morning and they looked good as well. Great news. This morning the ICU team and the oncology team met and decided that since she looked so good, hadn’t seized for a while, slept all night, and missed 9 North that it would be best if we moved her back to the floor on 9 North. After a very scary night Emily is doing great. She’s been smiling, singing, and having a great time. Her alertness has been amazing! The team will probably increase her anti-seizure dose because she’s grown so much in the last three months.

The test results have shown that the seizures were most likely caused by a low level of keppra(anti-seizure med) in her system. This is great news because it’s an easily managed problem. The plan for the rest of the week is to get that MUCH NEEDED port-o-cath put in either Monday or Tuesday and the next round of chemo should start shortly afterwards. For now, we are back on 9 North completely exhausted and happy last night is behind us. Thank you for your continued thoughts a prayers.

September 13

Well it has been another long week in the hospital. As you know we had to take out her two central lines. This was done on Tuesday. Emily is actually feeling good. She’s smiling and chatty and having fun looking at the thousand stickers which line the ceiling of her crib cover. Emily has had multiple negative cultures since the single positive culture over a week ago. She was on call for getting her port-o-cath placed on Thursday but late in the afternoon they decided to put her on the schedule for Friday at 1:30 because the OR was running behind. Friday, 1:30 came and went. We were actually taken down to the pre-op room around 4pm only to find out that the general surgeon wanted to postpone the placement until Monday because of the one positive culture and the fact that we didn’t really “need” the port until next week. He wanted to give Emily as much time as possible to heal from central line removal that took place four days ago. This delay was disappointing because Emily had had nothing to eat all day in preparation for the surgery on both Thursday and Friday. This delay was also unnerving because you don’t want these decisions taking place moments before surgery. I can only assume the decision-making process for surgeons involves the weighing of benefits and risks all while being familiar with the patient’s history. Why this was wasn’t done before our arrival to the pre-op room is beyond us. But, even if we have questions regarding the decision making process we will never deny that everyone had Emily’s best interests in mind.

We are still in the hospital and will be until Emily gets her port placed next week. Emily is scheduled to receive her next round of chemo shortly after the placement of her port. This round is supposed to be a bit easier on Emily because the chemo is just intrathecal and oral, but anything is possible with our little atypical Emily. Its great being together as a family during our hospital stays because one of us can get food, coffee, and more coffee all while the other is on Emily duty. The nursing staff has been wonderful and helpful as always. Thanks again for all your thoughts and prayers!

September 8

As you may or may not know Emily has a port-o-cath and a double lumen. They are both central lines that go into the veins near her heart and are used to administer Emily’s medications, fluids, and chemo drugs. In the last post we mentioned waiting for a bacteria or virus to grow out of her blood cultures that were taken last week. We got word yesterday that one of her lines grew out a bacteria called Enterococcus faecalis. Enterococcus can be very difficult to treat because it is resistant to a large number of antibiotics. The infectious disease team’s assumption is that one of the lines is the source and since her whole system is at risk they must take out both lines. This will be happening today in an OR procedure. Emily hasn’t presented any symptoms associated with the bacteria, so they feel like removing the lines will give Emily the best shot at clearing her system.

Once her system is clean, which will hopefully be in 48-72 hours since they are using a new antibiotic, they will replace her port-o-cath, in an OR procedure at the end of the week and we will begin the next round of chemo next week on schedule. We will replace the double lumen, which was placed for stem cell harvest, later on in the protocol. Even though general surgery replaces lines all the time, we are aware of the risks. Emily has such an incredible support system, we can’t thank everybody enough. On a positive note, Emily has been smiling and in good spirits. Katie is also doing well since our new hospital neighbors and fellow ATRT family Cameron, Aileen, and Avalanna have been bringing her coffee around the clock. Thanks to all and we’ll keep you posted!

September 6

The whole family is back together again after an eventful week. Emily is still in the hospital feeling much better. As you know we came into the hospital when Emily threw up a small amount of blood. We thought we would only have to get her some platelets and then be sent home. Boy were we wrong! Emily did get platelets but kept throwing up and we were seeing small amounts of blood. Monday night Emily threw up two times where the contents were frank blood. It wasn't good. The next morning our nurse Karen and Katie were getting Emily ready for the day and she threw up blood again. At this point the team was worried about her liver function since one of the side effects of the last chemo cycle is liver failure. After a series of blood tests and an ultrasound, liver failure was thankfully ruled out. The GI team was then called in and they determined that the most likely source of blood in her vomit was a tear in her esophagus. They didn't want to scope her esophagus since her counts were so low but they were just going to treat it and see how she reacted. They increased her protonix dose and this is used to keep her pH as neutral as possible. They sampled her stomach pH earlier in the day and were surprised that it was 1.5 which is extremely acidic. Since they added the extra protonix and the zantac she's been feeling much better and her stomach pH hasn't fallen below 3. In addition to the additional neutralizing agents the GI team is also giving her carafate. Carafate is given directly into her stomach and is used to coat the stomach and the esophagus to help heal the tear. So far so good! She's only thrown up twice in the last two days and we haven't seen any blood! At some point this week Emily spiked a fever because her counts were at zero and we are still waiting on cultures. This may affect the stem cell harvest we want to do on Monday, if something does grow out we won't be able to harvest this round but can later on in the protocol. We are still in the hospital but she's smiling and feeling better. We are so excited to be back together again and it gives us such a sense of relief knowing that we'll be together every weekend because of your help. Thank you so much! Another special thanks to Cheryle for turning that little studio in Coolidge Corner into our new home. Great work! The place looks unreal and we can't wait to actually cook a dinner together for the first time in six long months. Thanks so much for your love and support.

September 1

The ER doctors decided to get a CBC and a head CT. The CBC was scheduled to rule out low platelets and low hematocrit (% of red blood) and the head CT was scheduled to rule out a shunt malfunction. Both of which could have something to do with the blood in Emily’s vomit. The other and more likely possibility was that Emily may have ripped/tore a piece of her esophagus while she was throwing up. She’s been getting sick quite often and some of her retching has been pretty intense. This is actually fairly common for kids who have low counts and are getting sick over and over again. Based on the head CT results they decided that Emily’s shunt was functioning properly and her CBC came back fairly normal. The only item that needed to be addressed was her low hematocrit. The ER doctors decided to admit us at around 2 am, which meant that we weren’t up in our room until 3am. It was a very long night and all three of us fell asleep as soon as we were up in 9 North.

Later on Jay Drumm, Greg, Dave and his girlfriend helped us move our stuff into our studio. We moved everything in just under two hours and are so very thankful for everyone’s help. As I write this Cheryle, Katie’s mother, is cleaning and organizing our little studio for us. Thank you Cheryle! After the move Greg and I were able to stop by and say goodbye to Emily and Katie before our flights back down to Virginia. Emily is still in the hospital but will probably be discharged tomorrow. As of this evening, Emily is still getting sick but we understand that this is part of the process. Her counts are dropping and she feels awful, but Emily is tough and Katie is doing such an amazing job taking care of her. In a couple of days we'll have our smiling baby back! Keep up the great work Mom! Take care and we’ll keep you posted! The first day of school is tomorrow and this teacher needs to get some rest.

August 31

Emily finished up her 6th round of chemo on Friday. The whole round was on an outpatient basis, which means she went to the Jimmy Fund clinic during the day, received her chemo, and then went home (the hotel). Katie took Emily to the clinic every day, since I was at school down in Virginia, and did a great job holding down the fort. Emily definitely got sick with the chemo, Wednesday night was particularly difficult. She got a slight fever but because her counts were still high they decided not to admit us. Thursday night was also difficult but for different reasons.....I got a call from Katie around 10:00pm on Thursday night. She was in hysterics. For those of you who don't know, Katie has an extreme Rodent phobia. They terrify her. You can see where this is going, she saw a mouse run from under one bed to the other. A mouse. On top of everything else we now had to deal with a mouse. Darn mouse. We decided that since I was arriving early the next morning I would deal with the mouse, get a refund for the night and switch rooms while Katie took Emily to the clinic for her final day of round six. After the mouse fiasco was taken care we settled in for a quiet night. Saturday, Clint and Leah drove up from Virginia and Dave flew in from Savannah. We had a great time catching up. Katie's parents flew in this morning and we are getting ready for the big move tomorrow. Instead of packing up all of our stuff tonight, Emily decided to throw us a curve ball. There was blood in her vomit and after calling the on-call Fellow we were told to go to the ER. I am writing this from the ER, they want to do a chest X-ray and some blood work, but since she doesn't have a fever we hope this is a quick visit. We'll let you know how the rest of the night goes.