When we started this journey six and a half years ago we quickly learned that there would be good days and there would be hard days. Yesterday was one of the really hard days. Emma’s scan results were not what we had hoped. There are days in life where you feel like you have been beaten down and then stomped on and that is how we felt after getting results yesterday. I just didn’t have it in me to write a post last night, so here it is. These scan results were going to be important and we knew it. We also knew that we had seen some big neurological changes in Emma over the last few days, which made us very nervous. Even knowing that bad news could be coming it doesn’t make it any easier to hear.
Unfortunately, Emma’s scans showed that her tumor has grown 5mm since her scan 10 weeks ago in June. This is considered significant growth, and means that the treatment we were on is not controlling the growth of the tumor. This in itself is really disheartening because Emma had been handling the treatment so well. It makes me sick to think that this whole time we have been doing chemo and fighting and that stupid tumor was still growing.
The additional growth is not the only “bad” change that they saw on the MRI. Until now most of Emma’s tumor growth had been from where the main tumor sits near midline on the right side toward the outer part of her brain on the right side. This is where there is a cavity from where previous tumor had been removed. This time the doctors noticed changes in the tumor that are applying pressure to blood vessels on the left side of her brain (which is what controls her motor movements on her good side). They feel this slight change has impeded the blood flow to vessels on the left side of her brain because of some “white spotting” on the MRI that indicates lack of blood flow. Dr. Chi, our oncologist, and Dr. Ullrich, our neurologist, feel that this could be what is causing the neurological changes we are seeing. Emma’s difficulty with sitting, staying balanced and some motor control/strength in her good hand could be side effects of the good side of her brain not getting enough blood flow because of the new tumor growth. This news is pretty devastating to us, because Emma can do very little with her left side due to the tumor and previous resections. She relies completely on her right hand and right side to do almost everything. If her function to her right side becomes impacted that would be incredibly devastating to her ability to function.
We have several problems that need addressed and right now we are taking one problem at a time. Dr. Chi and Dr. Ullrich both felt we need to do a MRI Arthrogram as soon as possible. This test is an MRI, but they use different contrast and take images differently to get information on the blood flow of the vessels in the brain. Apparently your blood vessels can find new pathways, so they are cautiously hoping that if we can do a few things for Emma like hydrate her better and give her aspirin each day that this could happen and restore adequate blood flow to the left side of her brain. We need this test done to get more information though. Dr. Chi is also sending her scans over to Neurosurgery to look at to see if they think another resection to debulk her tumor or debulk some of this new growth on the left side would be recommended. (And more bad news, Dr. Goumnarova, the neurosurgeon, who did both of Emma’s previous resections is no longer at Boston Children’s Hosptial.) Dr. Chi also said that no matter what is decided about surgery we will need to start a new chemotherapy regimen. She has already applied for compassionate use for the TAK 580 trial and has already returned one set of paperwork for it. She is going to push harder to see if the drug company will approve her for compassionate use of the drug. If not we will need to make some decisions on a different treatment. She said there may be another treatment or two we could look at, but she would strongly consider going back to TPCV, which was the treatment Emma did three years ago that provided her stability while on the treatment and for a year after.
So the first thing we will do is try and get 1.5 liters of fluids in Emma everyday because the more you drink the better your blood flows. This is no small task, but we are giving it our best to get that much in her. The second thing that needs done is getting the MRA done. Dr. Chi’s assistant worked hard and somehow luckily was able to get us an appointment to get one done tomorrow at 2:00. We were supposed to fly home today, but felt like we needed this information as soon as possible so have postponed coming home. We will get this test done tomorrow and Dr. Chi was going to talk to neurosurgery today. We are hoping to talk to Dr. Chi tomorrow after the scan and get more info on the what the team recommends, whether it be surgery or chemo. The results of the MRA will also tell us if it is safe to start giving Emma a daily aspirin to help thin her blood and hopefully improve blood flow.
We have spent most of today trying to sort out hotels, flights, and pre-approval for the the MRA with insurance. The good news is I think we have everything adjusted and our plan now is to fly home Saturday. Emma has been alright today. She has been able to sit on the floor and play by herself for short amounts of time. Her overall strength and balance seem a bit better today, but are certainly not what is normal for Emma.
We are feeling pretty disheartened at the moment. It is so infuriating to watch all Emma endures and continue to give her chemo and still the stupid tumor grows. We are sad, scared, worried, mad, and devastated all at once. Emma is such a trooper and such a fighter. She endures more than any 7 year old should have to and goes through so much without complaint. Papa Alt is here with us in Boston, and he said it well yesterday when they took her back for her scan, “She is just amazing. She acts like this is all normal.” And truthfully, nothing she did yesterday was normal for a 7 year old. We are extremely worried about the neurological changes we are seeing with Emma, and very scared about what this will mean for her and how she is used to functioning.
Right now we are just waiting, and need more information before we can move forward. We appreciate all of the messages, texts, and prayers that everyone sent our way yesterday. We can feel the love and support, and it really does make these hard days better. Thank you for always staying with us and supporting us. Continued prayers for Emma’s skills to improve, answers from the test tomorrow, wisdom for Emma’s medical team as they decide next steps, and prayers of strength for all of us are appreciated more than you know. While yesterday and today feel like really hard days on this journey, we pray that there are better days coming soon. Thank you for always keeping us EmmaStrong!