I'm starting a blog to keep everyone updated on what's happening with our baby boy, Thelonius Luther. ~~I am starting by posting all the emails I have sent out and a brief synopsis of what happened prior to surgery. ~~~
He was totally fine on Saturday morning August 20th. We woke up at 6:30a.m., he nursed, went back to bed together and snuggled till 8:30 a.m.
(Jamie was in Roanoke helping his sister Meg with straightening out their mom's estate. For those of you who don't know, Jamie's mom Marge passed away the day Theo was making his way into the world. She left on May 25th, he was born May 26th at 12:02 a.m.)
Around 10:30 a.m. on the 20th, Theo got very pale, very lethargic and sleepy. He threw up twice and I called the pediatrician. She said to go the ER if he threw up again. I noticed as I was watching him that he was making very agitated movements on his right side, but not so much with the left. He was also having a hard time keeping one eye open. After the third time vomiting, we went to the ER at St. Mary's. After I explained what I noticed with the movements, a CT scan was ordered and blood was found in the brain. They sent us by ambulance immediately to MCV--the Medical College of Virginia--a teaching hospital here in Richmond. Once there, an MRI was ordered. Jamie got in town around 5:00 p.m. after my call. We were told that the blood in the brain was actually a tumor located in his right ventricle--the space in the center of the brain that holds our cerebral spinal fluid.
I know this may be a big shock to many of you on this list, but I wanted you all to know and to ask for your prayers and positive thoughts, meditations, chants, anything you will send our way. My baby Theo, 12 weeks old this past Thursday has just gone down to the OR at MCV for brain surgery to remove a large tumor from the right ventricle of his little brain. I am writing this from the PICU family waiting area. He began vomiting on Saturday morning and a CT scan showed blood in his brain. A subsequent MRI revealed the tumor. No previous signs or symptoms that anything was wrong at all. He has been a bright, active, playful little boy until Saturday morning. Jamie and I are doing as well as can be expected. I am having trouble just believing any of this is really real. I am holding it together pretty well. I have positive feelings and am holding on to all hope. Best case scenario they can get it all out and he will be home in 4 days or so. He may have to have chemo, but maybe not if they can get it all. His neurosurgeon said it looks from the pictures that most of the tumor (6x6x6 centimeters--a little larger than a golf ball) is very easy to get to but there is one section where it is being fed my arteries attached to the ventricular wall. Some good news is that the tumor has not been growing in any grey matter and so any damage to the brain tissue will be minimized. Dr. Ward says that he operated on a kid with a similar size tumor , same spot, under the age of 1 who is a normal and healthy 11 year old boy now. My parents are here, we have a great deal of good support. Please just help me by sending out love, prayer and good thoughts and energy to my boy and to us as we go through this. Surgery should be done in about 6 hours--around 7 p.m. I guess. We are on the 7th floor in room 7-608, but I will post a mail when I know something. We'd rather not have a lot of visitors right now though please. Alice and Jessica will have information pretty quickly after I know if you would like to also go through them for those of you who know them.
Keep us in your thoughts and prayers---
Theo's surgery went very well. He is resting now in his room. They are monitoring him closely. The surgeons feel that they got about 95-98% of the tumor. With brain tumors, it is nearly impossible to get the whole thing out because of the delicate surrounding tissue. If you had a tumor on your colon for instance, the surgeon would take the whole thing out plus 2 or 3 centimeters of tissue all around the thing to ensure that all the bad cells are cut out, with a brain tumor, you clearly can't go scooping out extra brain tissue just to be sure. So, you get what you can see, but you can't see every little cell even with the magnification they use during the surgery. They will do an MRI in the morning to see how much is left and where. Once the pathology report comes back on the tumor, we will know what kind of tumor it is and what course of treatment will be most effective for getting rid of the last pieces. They don't know details yet, the pathology report will be back hopefully tomorrow or Wednesday. They do know from initially looking at a piece of it under the microscope that the cells are dividing, which means it is malignant, but it is not highly aggressive. They said the cells don't look very "primitive". The more aggressive and dangerous a cancer cell is the more primitive it is said to be, dividing quickly and destroying healthy tissue quickly. The less aggressive cancers divide more slowly, all the way up to the benign ones that just sit there and don't divide at all. We knew it wouldn't be benign because we were told that you just don't see tumors that size in the brain of a baby that young that aren't malignant-the question was how bad. They think from the cells they saw that it is not an extremely aggressive cancer. But we won't know for sure till we get the full report. After that, and the MRI, a determination can be made about how much chemo will eradicate the remaining cells. So please just keep up the prayers or what ever way you communicate with the divine or the Universe or whatever you call it.
I feel so much better just knowing there is no longer a big tumor in my baby's brain. He is not out of the woods yet, but he is doing ok and is stable right now. He will be in the PICU for a while. I'll be here every day this week. I don't have the number on hand, but if you want to call MCV and ask for the PICU and give them his room number you can probably get us that way or ask Lisa or Alice. Feel free to share info on his status with mutual friends. We want all the love and support and positive vibes possible. Thank you so much to everyone. You have all been so supportive and helpful and loving. I can really see and feel how much you love me and Jamie and Theo and please just know that I appreciate it so much. Everyone has been so wonderful. I know when you say "Let me know if you need anything", you really mean it. I will keep you updated.
We went home last night at about 11:30 p.m. and they called me at 1:30 a.m. to tell me that he was having some problems. I got back here at about 2:00 a.m. He had to have an emergency ventriculostomy last night around 2:00 a.m. a tube inserted into the ventricle in the brain to drain fluid. After some irregular pupil dilation, they did a CT scan and found increased volume of fluid and so needed to do that right away. This is not too abnormal--most kids would have had the thing in there after the surgery or they would have at least left an open hole for the possibility. His brain looked so good after surgery that his surgeon went ahead and closed the skull. This new thing is just a tiny hole that will close up quickly on its own after the tube is removed. So now they have an outside and an interior monitor measuring the ICP (intercranial pressure). He has good reflexes and movement today and they are now getting ready to begin feeding him breastmilk through his feeding tube (threaded through his nose to his belly). They will do the MRI this afternoon to get a better picture of what is left behind of the tumor and also how the fluid and the empty cavity (where they took the mass out) are looking.
That's it for now--I will let you know of any changes or when we get the pathology report back which might be back late today or possibly tomorrow (Wed.).
Keep up the prayers and good thoughts--
We love you --
He is doing well right now. We got the MRI and the neurosurgeon says it looks great. There is some tumor left, but we expected that. We won't know much about any further course of treatment till the pathology report comes back tomorrow. He will most likely have to have some chemotherapy but we don't know how much or when or anything. One of the drainage lines has been removed and it appears that the other one--the ventricular line put in last night, is working great and both sides of the brain appear to be beginning to "communicate" with each other. This is based on the fact that the existent drain from the ventricular line is not only draining excess fluid but blood waste from the surgical site on the right side as well (with that drain having been taken out). This is a good sign. His pupils have been responding well pretty much all day and he has had good reflexes. They just finished an hour of EEG monitoring which shows that he is having some mild seizure activity--when he has stiffening of his little arms and couple other signs, but they can't really tell us any long term information or anything. His brain has undergone major trauma, so a lot of it is due to the shifting and pressure, swelling, etc. They are going to leave the EEG going all night. We'll keep you updated.
Thank you to everyone again for all your prayers and love and support.
We are going home to sleep for a little while now.
He had a quiet night--we got a little sleep at home. Everything looked fine this morning. They ran the EEG all night since they saw the seizure activity last night. They started him on some anti-seizure meds last night and so it looked good after that. A short while ago, more activity was showing up on the EEG with a concurrent increase in his ICP numbers--ICP is the intercranial pressure which they are measuring with 2 different monitors one of which is the ventricular tube draining excess fluid that they inserted night before last. Anything below 20 on the ICP measurement is a good #. They started going up to 21, 22, 23, 24 and 25. The neurologists came back in to check. After a bit they saw that the ICP # was continuing to be high even when the EEG lines showed normal activity. It is not clear whether the apparent seizure activity is causing the elevated ICP #s. They are also not positive that what we are seeing on the EEG is actually seizure activity per se, but may be just increased electrical activity or discharge due to the amount of trauma his little brain has gone through over the past few days. They are treating it as seizure anyway to be safe and are increasing the seizure medication. The nurses are monitoring his ICP # and the neurosurgeons have been notified. Since everything is draining well, it's unclear why the numbers are elevated. They may need to do another CT scan later today, but we'll see. We were told this mornign that it may be 5-7 days before we get the pathology report back. Apparently, they have to do all sorts of stuff to the specimen to get all the information they need. So, the main thing today is to keep the seizure activity --or whatever is creating the activity on the EEG--under control and carefully monitoring the ICP. When I left the room, the numebrs were back down to 9, 10 ,11. Hopefully, they will just stay that way and continue to be low.
I'll keep you posted. Please just keep up the prayers and good thoughts, energies and meditations, etc.---Jamie just came in to say that they are taking him for a CT scan now.
The CT scan today did not show anything abnormal. No increased swelling or fluid, and actually showed that the brain had shifted a little bit more toward it's original shape--the right hemisphere moving back into the empty space left by the tumor and the midline moving more towards normal. This is pretty good news, cause the neurosurgeon said yesterday the only thing better he could have asked for on the MRI would have been more shifting back to the normal shape of the brain, so it shows improvement since yesterday. They now think that the increased pressure we saw earlier this morning must have been caused by the seizure activity. He is on 2 seizure medications and they are keeping him on the EEG for the rest of tonight. They will try taking him off one of the seizure meds tomorrow to see how he does. The main thing now is still controlling seizure activity, keeping the swelling going down, and keeping Theo peaceful and resting. The chief pediatric neurosurgeon said this evening that he will talk with the pathology people tomorrow to get at least a preliminary report on the pathology. The very detailed report will still take several days longer but hopefully we will know tomorrow what kind of tumor, how aggressive and maybe some idea of possible treatment plan. Everything is stable right now.
Everyone who is sending me mails, I am sorry if I don't answer each one, but please know that every time I read an encouraging word of your love and support and good thoughts, your brain tumor success stories, reports on prayer circles and on all the people we don't even know who are loving and praying for my baby right now, helps me to feel more and more hopeful, supported, and loved. The outpouring of love and support we have been receiving is really wonderful and so needed and appreciated. Each word of hope and encouragment gives me strength and takes away a little piece of the hurt in my heart. I know Theo can feel it too. Everybody who has offered to do things to help us out, thank you, I really will call you if I think of something. My dear friend Michael is taking care of Chloe and the cats during the day, and other than that, I can't think of anything that needs to be done right now.
I'll keep the mail coming as we hear news and as he progresses.
I have heard from some people that a part of one of my messages was misinterpreted--I didn't mean to imply that we don't want any visitors at all, I am just asking that anyone who is thinking of visiting call first. The doctors want Theo to have very little stimulation so he can remain as calm as possible. Plus only three visitors can be in the room at once. They don't generally count me as a visitor, but it depends on who is on duty at the front. There is a very nice family waiting area with lots of seats and a kitchen and this computer where people can be comfortable while waiting to come in the room, but if several people come at once, it can get crowded. And sometimes might just not be a really good time. So, please don't think we don't want to see you or want visitors, cause we do, I just ask that you give us a call in the room first to check.
Again, I can't thank all of you enough for al the continued love and support.
He is doign well right now, he's stable, had a quiet night. They are reading the EEG from overnight and if they look good are going to take him off the dialantin--one of the seizure medications he is on. The other one that is controlling seizures, phenobarbitol, is also helping reduce some swelling and keeping him a little sedated. They just reduced his pain medication a little bit to see how he would react. All the meds he is on are very, very small doses right now. Everybody is pretty happy with all the pictures so far (CT and MRI) and we are just waiting for the swelling to continue to go down in his brain. With all the swelling, it is hard to tell what things really look like in there and of course, we can't know any long term effects till further down the road. All his reflexes looked pretty good this mornign when the neurologists came in to see him--Dr. L says there is no loss of any movement since yesterday--it looks about the same, which is ok. He did tell me that the eyes moving around is ok, it's any big change or irregularity in pupil size that is the most concerning factor and his pupils look good right now. NO word from pathology yet, but honestly, I don't care about that right now. Right now, I'm mostly concerned about his current state, the swellign of the brain and the seizure activity. We will deal with the pathology report later.
Love you all--will keep reports coming-