Saturday, November 7, 2009

Aileena- Brain Tumor: Ependymoma

What a month. Most of you are probably aware of Aileena's diagnosis with brain cancer after finding a tumor on Oct. 8, 2009. If not- she is doing great! We update a little more often through Facebook and email. So, if you want on the email list, let me know and we'll add your email address. The following is the story and how this major change in our family started a month ago.

Saturday, October 10, 2009
Thursday evening (Oct 8, 2009), our daughter Aileena (age 7), woke up from a nap and was having trouble speaking and noticeable problems on the right side of her body. It was like she had a stroke. Medic One took her to the fire station on Kent Kangley (about 1 mile from our home) and they flew her via helicopter to Harborview (Seattle). When we arrived about 40 minutes later, they were doing some imaging (CT and MRI) and discovered that she had a tumor and cyst in her brain (left side a little above and behind her ear). The stroke-like symptoms were from pressure on her brain. They gave her a steroid which reduced the pressure and shortly thereafter, she was talking much better and regained much of her right side control. They then transferred her to Children’s Hospital late Thursday night.

She had a surgery to remove the tumor/cyst Friday afternoon. It went very well. The surgeon (Dr. Jeffrey Ojemann) estimated a 2-5 hour surgery, and finished in just under 2 hours. He is one of the best surgeons in the country for this type of procedure and was very happy with the results. He believes he was able to remove nearly all of the tumor/cyst, which they will confirm with additional MRI on Saturday. This is the most important treatment as a full removal greatly decreases the risk of recurrence. He stated it was a very aggressive and rare cancer. But, he also said if a kid is going to have a brain tumor, this is the one to have because treatment of it is very successful. They are still waiting pathology reports, due on Wednesday, to confirm it’s the type of cancer he strongly believes it is (and initial pathology reports support his belief), but so far, so good. After the surgery, we were warned that Aileena could have some difficulty with speech and right side motor skills (the left side of the brain controls the right side). Fortunately, she was doing fantastic in both areas- we didn’t notice anything out of the ordinary- besides being a little drugged up. In fact, as we came back to her room, we heard her loudly telling the nurse, “I want it out!”, meaning the catheter. She wanted nothing more to do with that. This has been quite the past day and a half for her and her family. We’re grateful that so far all steps seem to be very positive. The surgeon informed us that if it is the type of cancer he thinks it is, then some outpatient radiation treatment is likely, with MRI’s every 3 months for a year or so, and then less often after that. This type of cancer does not typically spread to other parts of the body, and if she is clean for 7 years, it is very unlikely it will ever come back. So, we are anxiously optimistic until his educated guesses are confirmed on Wednesday.

A picture after her surgery:

Sunday, October 11, 2009
We had a good day Saturday. Aileena got out of ICU! She has a great room and we can see the top of Husky Stadium. She doesn't seem to think that's as cool as Dad does. She had an MRI Saturday morning and the surgeon reported this morning that it showed all clear in her brain and spine, which is very comforting news. The kind of cancer the surgeon believes she has limits itself to the brain and spine, which apparently is a good thing. Having no signs of it in her spine was great. So, they believe they got it all. The game plan is still to wait for Wednesday when the “tumor board” meets (all surgeons, pathologists, and a bunch of other medical people that review all tumor/cancer cases and develop a treatment plan). Hopefully, they’ll confirm the surgeon’s diagnosis and initial pathology report that the cancer is what he thinks it is. If it is, it’s rare and aggressive but responds extremely well to treatment. Aileena fell asleep watching a movie on Dad's laptop last night (so he could command the TV and watch the Husky game), has been eating very well, has been walking around her room, coloring, chatting, watching TV, playing with her new stuffed animals, etc. She’s about to take a shower and get her nails painted by Mom.
The board in the room has for her goals to, “eat, drink, walk, poop”. That’s a pretty successful day for any of us. We couldn’t be happier with her progress and the surgeon commented again this morning that she is doing far better than he would have expected. She’s probably looking at going home after Wednesday, but hopefully before next Sunday. Your good thoughts and prayers have been felt, appreciated and answered in so many ways. Children’s Hospital has been wonderful.

Monday, October 12, 2009
Aileena comes home tomorrow! That is at least four days sooner than anticipated. She’s had a great day. Walking around, up to the childrens play room, packing all her things, etc. She is ready to get out of here! She also met her four goals (see email above). The doctors said surgery is the hardest part of the entire ordeal, and she went through that with flying colors! We couldn’t be happier. We wish Wednesday would get her faster so we can get the final diagnosis and treatment plan. Whatever treatment is recommended will likely start in a couple of weeks. We have a picture showing the area they cut out of her skull. Pretty crazy. If you’ve cut off a pumpkin top and marked it so it will go back to the original spot, that’s what they did to her skull.

Tuesday, October 13, 2009
Aileena is home! We are so excited to have her. The only side effect of all of this so far is that she is super chatty. Guys, the talking button in a female brain is in the back left corner. She had another great day. She loves being home, lots of cards and wonderful gifts, and great visitors. Dinners have been provided and we are truly blessed by the outpouring of support. Thank you all! Tomorrow is our big day with the doctor at 2:45. We’ll get the final diagnosis and treatment plan. We hope and pray for the initial diagnosis of our surgeon.

She’ll start school in a couple of weeks, though she may be able to get a couple of hours in each day starting next week. Dad says he can’t say he's been a part of many “major” miracles. In this case, we have. It has been an amazing, though difficult, experience so far. As we look back the past few days we see that miracles occurred. Changes in schedules that had been set for weeks/months prior to what started all this, family/friends that were nearby, the location of some of our kids at the time the symptoms first started (so they didn't have to see what she was going through and therefore get extremely worried), the first responders that came, availability of the life flight helicopter, some of the best specialists in the country that cared for her, her amazing recovery to date, no apparent effects from the surgery, etc. etc. etc., all evidence that miracle and the hand of our Heavenly Father. We have no idea why we have been so blessed since this all began. But, we are so grateful for those blessings and know that we are in good hands regardless of what tomorrow brings.

We are also very humbled by the love and goodness we experienced. We are very fortunate. We saw many kids at the hospital that may never make it home, or may come home with tremendous handicaps and obstacles. It’s been part of our prayers that some of the good thoughts and prayers given for our benefit will also reach those children and their families. There is much good in this world, and we appreciate you sharing so much with our family. Keep those prayers coming, they are felt and appreciated.

Wednesday, October 14, 2009
We have excellent news! The initial diagnosis is confirmed. The tumor/cancer is known as an Ependymoma, grade 2. There are different types of ependymomas depending upon the location, grade (aggressiveness) and a bunch of other factors above my head. It is rare, accounting for less than 10% of all brain tumors, though a little more common in kids. Approximately 2/3 of those are found in the lower brain/spinal column. 1/3 are found in the area where Aileena’s was- which is some fancy medical term, Supratentorial, that means the upper portion on the brain. After all, I’m just a simple attorney when it comes to words! Because of the location, lower grade (grade 2 vs. the higher grade 3), her response to the treatment, the belief that all of the tumor was removed according to the surgeon and the post-op MRI; the doctors are very optimistic about Aileena. Her recovery continues to be unbelievable. We had several doctors’ comment today about how they cannot believe she is 5 days post-op. The odds of recurrence are fairly small (about 20%) which is good in the realm of brain cancer. More importantly, if a recurrence happens, the same type of treatment occurs with similar good results. In some other types of cancer, recurrence is a horrible sign, which is fortunately not the case here. If this tumor does recur, then about 95% of the time it does so in the same area and does not spread to other parts of the brain/spine. That all said, we know she may not be “cured”, as only time will tell.

At this point, we have two options: 1) radiation therapy. This is very localized, but does present some risk of damage to good tissue which can effect memory, language, growth. This is fairly low risk- but still a risk. Radiation is very precise today. Or, 2) Watchful waiting. Because this tumor is rare, there aren’t really any studies to go on. However, over the past couple of years, doctors are beginning to think that if a full removal occurred during surgery, radiation may offer little or no benefit. There have been patients who have gone on to live very healthy and cancer free lives with surgery alone. In our discussions, the doctors wouldn’t really give a recommendation, but seemed to be leaning toward the watchful waiting approach. This is based upon the surgeons belief he was able to remove everything, a very good MRI after surgery that showed no residue, and Aileena’s excellent recovery. There is no wrong choice in this regard. As monitoring and treatment of any recurrence would be the same regardless of what we do now. So, we’ll be having some significant discussions, along with fasting and praying.
Regardless of the decision, monitoring will be an MRI every 3 months for a couple of years at least. Over time, that will decrease. Once she hits about 8 years with no recurrence, the odds of recurrence drop tremendously. An MRI can pick up any recurrence that is just a few millimeters in size. That is very small and long before any symptoms might arise. This type of cancer rarely spreads (it stains in the brain and spinal cord if it does spread), affect other areas of her body, doesn’t pass on genetically, cause an increase risk to our other children, or seem to have other impacts. If it doesn’t return, we expect Aileena to have a full and healthy life. Even if it does return, treatment remains very successful and we would still anticipate a full and healthy life.

Our oncologist (Dr. Sarah Leary) today said that she was happy to pass on such wonderful news. It’s hard to believe a week ago that any news related to brain cancer would be positive. But at this point, we agree with her. We are very happy with this diagnosis and know we are so fortunate to have very successful treatment options. Unfortunately, we are the exception when it comes to brain tumors. Children’s Hospital is an amazing place and we have full faith in the care they have, and will continue, to give.

We have felt much love and support from all of you, and we hope you have felt our love and prayers of thanksgiving for each of you. Your support has made this ordeal much easier for our family. Notes, emails, phone calls, balloons, stuffed animals, food, kind words, and so much else has lifted our spirits- especially Aileena’s. She has mentioned more than once that she didn’t know so many people knew her. She declared, “I’m famous”! Seeing her smile and laugh because of your simple acts has been priceless. We can never thank you all enough. Sarah, Aileena and I celebrated with dinner at the Space Needle. If someone told me on Friday we would be eating there in five days, I would have declared them certifiably insane. I’ve never been so happy to be wrong.

So, these posts should decrease in scope and frequency. That is good! We’ll continue to update as to the decision on her treatment along with MRI scans. Your ongoing prayers and support are appreciated. If you are inclined, especially family, please feel free to fast with us on Friday as we seek inspiration from our Heavenly Father on how we are going to proceed with treatment and for a full and complete recovery for Aileena.

Sunday, October 18, 2009
Aileena is doing great. She just gets tired easy. She even attended Church today and participated in the special primary program. She is off most of her medications now, except for the anti-seizure stuff (which is precautionary, she hasn't had any seizures). No more steroids either, which is good as I didn't need her trying to bench press me or anything.

We decided against radiation. That took a lot of thought, study and prayer, but we feel very good about that decision. However, that is still subject to review after our second opinion that is being done by Dr. Peter Burger (doctor at John Hopkins, and one of the foremost experts on Ependymoma tumors. Ultimately, the risks associated with radiation seem to outweigh any benefit, even if there is a recurrence (radiation doesn’t guarantee against a recurrence either). With the monitoring that will be done, any recurrence will be caught early and should be very treatable. The doctors believe her risk of recurrence is very low given the success of the surgery.
We meet with the surgeon and oncologist on Oct. 28, so we'll figure out the monitoring schedule then. We'll also get the second opinion from Dr. Burger. In the brain cancer world, I think they are a little excited to treat this kind of tumor. Pretty weird. Maybe that's why they make the really big bucks. Aileena should make it to school tomorrow for at least 1/2 a day. The kids are even arguing again! A sure sign of a return to normal life. We love it. We did the Walk for a Cure at French Field in Kent this past summer. Never did we expect this to hit so close to home given we don't have any family history of cancer. Aileena has already mentioned that she is looking forward to doing the walk this next year. Her 8th birthday is coming up on Nov. 4 and her plan is to have friends bring presents to donate to Children's Hospital. Our family is getting to learn some wonderful lessons because of this. She told me today she wants to go to a Husky football game. They must have turned on a football switch in her brain too, as that’s a first. I’m still a little emotional about that.

Friday, October 30, 2009
We got a bit of a curveball yesterday. Aileena’s file was sent to a specialist (Dr. Burger) back East for a 2nd opinion. Apparently, Ependymoma’s are rare enough that pretty much all doctors send their files to this doctor. This doctor is apparently the guy that came up with the rating system used in determining how strong it is. Under his rating system, it is a Type II Ependymoma (there is only type II and type III). However, in his review, he believes it showed a component that is more common in Type III Ependymomas, but agreed everything else points to Type II. These types of tumors have a lot of gray area when it comes to diagnosis, so it’s difficult to type. Our doctors were good at explaining this was a possibility a couple of weeks back. That doesn’t necessarily change the prognosis or anything, but does change the doctors recommendation of how we treat it now. So, even though we were hoping to avoid radiation treatment and had done a lot of thought and prayer about it, it is now more strongly suggested by our doctors. So, we’re going to go with their recommendation and do whatever we can to insure this never comes back. It has been a small blow as we had a very optimistic hope that we were done with treatment. This should help further decrease the odds of a recurrence, so we’re happy about that. We’ve been truly blessed given that Aileena has done so extremely well. Right now, she is the same as if all of this never happened.

Aileena is back to school full time! She didn’t have any problems with the idea of radiation, though she obviously doesn’t quite comprehend it fully yet. She doesn’t seem to mind the trips up to Seattle as it involves dinner out each time. That may have to stop to give my wallet some relaxation! So, she was actually smiling when she learned we would be spending more time up there. Radiation is five days a week (during the week), but the appointments are fairly short (I understand the treatment itself is just a few minutes long each time). I’m not quite sure how long the 5 day/week lasts, but at least 6 weeks is our understanding. We are waiting to hear from the radiologist to set up the initial appointment and treatment time/schedule.
The treatment will be at the UW Hospital, so knowing we’re in the hands of the Purple and Gold is very refreshing! (Go Dawgs!) Our doctor informed us that the radiologist (Dr. Jay Douglas) is the best around. I asked if that is in the City of Seattle. She told me “No, the best on the West coast, and one of the best in the nation.” So, that is of course very comforting. If there was someone better to refer us to, she said she would tell us. She’s a very nice Doctor and we have great faith in her abilities. Aileena likes her, probably because her name is “Sarah”, like her Mom. Thank you for your thoughts and prayers. We’re learning a lot of stuff I never though we would. We’re also learning about what a great blessing it is to have good doctors, hospitals, medical care, friends and family.

Monday Oct. 8, 2009
Aileena's first radiation appointment is Thursday. They'll get everything set up, do another CT Scan, make her mask, and do a practice run. We expect they'll start the radiation itself on Monday. We'll have a lot more detail on the treatment plan come Thursday. Aileena is doing great- birthday parties, school, and doing everything she likes to do. Her stitches are almost all gone too! What a month.

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