Well, we had a good conversation with Dr. Graham. I'm sure CR absorbed a lot more of the details than I did so I'll let him post his version later. But, basically, Dr. Graham is willing to provide the stem cell collection and infusion (collection before Radiation Therapy and infusion after Chemotherapy treatments) portion of Abby's treatment. He is familiar with the St. Jude's study and believes we could accomplish the same thing locally.
At this point, Abby will have a catheter surgically inserted next Thursday or Friday at UMC in Tucson. They will begin the collection probably Monday, the 7th. They like to do 3 separate sessions with a day between each session. It sounds like each session is complete within an hour or two. The catheter can also be used for the Chemotherapy treatments.
She would then begin her Radiation Therapy at the end of the week at Good Samaritan Hospital. This would last about 6 weeks. Following the Radiation Therapy, she would receive 4, monthly Chemotherapy treatments I believe at Banner Desert Hospital. It sounds like our local oncologists would handle the specific protocol for the Chemotherapy. We are optimistic that they would be willing to consult with Dr. Packer in DC about what he has found out at his seminar.
So, praise God that things seem to be falling into place. Also, praise God that Dr. Shafron (our surgeon) is so concerned that Abby is taken care of. I really feel like he sincerely cares about her. We were having some trouble working with our neurologist getting orders for a blood draw to check her medication levels (we believe high levels of Dilantin to be the cause of her dizzy spells). He made a few phone calls yesterday and took care of something that we had been trying to do since we were in DC on Wednesday. Then, he called our house last night just to find out what transpired in our meeting with the oncologist. Finally, he called today to give us the results of the blood draw (which did indeed indicate that her Dilantin levels were too high), calculated her reduced dose and talked me through how to adjust her dose. He also offered to contact a very popular neurologist that we are interested in working with who also works at Phoenix Children's Hospital to get us an appointment. Why is this man who must have a million other things to do (I was told by his office staff that he was scheduled to be in surgery all afternoon today) willing to take the time to do all this for us? He is a very kind-hearted man, but I have to think that God has moved his heart in our favor as well.
Well, it's 3:06 and Elizabeth is still asleep. Another thing to praise God for! She took a really short nap this morning after waking up at 5:20 so by the time afternoon nap time came around she was one cranky baby! You can also pray that I will have wisdom about how to get us back into as much of a routine as is necessary and possible now that we have a plan. We all could use a little predictability :)
God's blessings to all of you prayer warriors! We love all of you!
Hopefully, a plan
Well, we'll know more details tomorrow, but we think we have the beginning of a treatment plan. God seems to be leading us to a doctor in Tucson who might be willing to do a part of Abby's treatment which will include harvesting stem cells. This will allow her to receive higher doses of chemo (after a 6 week round of radiation therapy). The stem cells would be given back to her to help her body recover more quickly from the chemo.
Please pray for our 1:00 pm phone conference with Dr. Michael Graham in Tucson tomorrow. Pray that he will be willing to work with us to receive most of the treatment here in Phoenix, that we will ask the questions that we need to ask and that he would be willing to converse with Dr. Packer (the Washington DC doctor who is willing to share the latest information he is receiving the next two days at a conference).
We'll update you more tomorrow.
Abby's Uncle Roy
More from the UK
I wanted to post this earlier but just didn't have time. This message is from the friend of Taryn's who ran in the Cancer run in the UK:
Right at this very moment I am extremely proud of myself, a rare occasion, but I have just completed my first Race for Life, in aid of Cancer Research. It was the most trying and deliberating physical event I have ever had to face and overcome.
It was in Leeds today at 11am, and the sun was high, bright and hot (a first for English Weather). There were over 3,500 participants, all women, racing in Aid of Cancer Research…all I can say is I was overcome by emotion, pride and love. At the beginning of the race as we (all 3,500) lined up, including some local celebs, we all stood strong and proud, families, spectators and event organisers stood cheering and we all just got caught up in a enthusiasm that came from deep within, each had a story, each had lost…it was like a united family…and for the first time in a long time I saw people I could relate to, and..well…I was very emotional as the horns blew…
I was stopped after the first km to interview for Calander news, after getting to know and interviewed prior to the race. After 2 km I felt like I couldn’t go on…I can’t describe the pain I felt in my heart, my chest and my shoulder, but it hurt...A LOT... The sun was relentless beating down upon us and I was starting to lose my drive, but something kept me going, something more profound than anything…My mum, and Abby… It sounds odd, but in my weakest moments, when I wanted to quit (I had a thousand reasons already in my head why it would be OK if I didn’t finish) but I repeated ‘mum’ and ‘Abby’ over and over again…I looked around and saw the inspiring image of hundreds of people running with such determination I knew I couldn’t quit, and I didn’t. I slowed down, however kept pace and determination right through to the finish line, where I was greeted by cheering crowds (felt quite special lol) and the TV crew again, who once again asked me how I was feeling. They had to stop filming at one point because I was so overwhelmed with pride and emotion, of knowing I had just completed such a difficult task for myself, for my mum, for Abby, and everyone else out there...I helped give hope…that helps me a great deal...
The crew were great, they took care of me, as I was racing alone, they were surprised but impressed, so I kinda got a big head...lol...
We went to Phoenix Children's Hospital early this morning for Abby's MRI which was done outpatient. She made it through without any trouble, and was even able to get her IV inserted after they had started the sedation, so she didn't need to worry about another needle stick.
After the MRI was done we proceeded to Dr. Shafron's office and met with him. They gave us the results of the MRI on disk instead of as films. He read them, and they reveal that there is a new "area in question" in a different spot in the right side of her brain. It is far enough away from the original tumor site that Shafron would not have seen it in the surgery. It was not on any of the pre or postoperative scans, which implies that it is new. It is not very big.
Along with this came the news that there is a possiblity that St. Jude's hospital in Tennessee might have a trial open that we could participate in. Shafron said the initial results from this trial are better than any he has seen, and our hemocs are also very interested in this. Abby would have to go to Tennessee to participate--she could not do it here. We're still not sure if she qualifies for this.
The question that remains there is whether or not she needs a second surgery, and if that affects her qualifications for the trial and the timing.
We meet with our hemocs late this afternoon. Please pray for this meeting. Thanks.
Sightseeing and Flight Home
Boy were we tired. Abby and Josiah slept almost 12 hours last night, we weren't out of bed until about 9:00 AM (DC time). Abby was quite perky this morning, so we decided to attempt sightseeing, even though we had some time constraints.
We caught the bus to the Metro, and got off at the Arlington National Cemetery stop, where we picked up a Tourmobile. This proved to be a nice way to get a good view of lots of places in DC there, though we didn't have time to ride the whole tour. Abby and Josiah got a big kick out of Mr. Lincoln's statue. I was once again struck by Lincoln's second Inaugural address, it is such a poigniant message. He clearly was a man of God, understanding that God's ways are not man's ways. We also got to walk through the Vietnam Veterans' Memorial. Boy was it crowded--I shudder to think of how busy it will be in the next few days.
We picked up the Tourmobile again and took it to just outside the White House Visitor's Center. It was hard not to go in, but our time was running short so we proceeded to the Federal Triangle Metro station and rode back to Georgetown.
When we got to the airport I called the doctor's office to confirm our appointments tomorrow. Abby has an MRI scheduled early (we have to be there at 6:30 AM), and then we will meet with Dr. Shafron again. Please pray that the MRI will clearly show if there is tumor that needs to be removed. Pray specifically also for the radiologist that will be reviewing the films. We are quite concerned that such a large component could have been missed the first time around--like I mentioned before, had we not gone to DC we would have never considered that there was any left.
If I haven't mentioned lately, thank you also so much for your prayers. They mean more to us than you can imagine.
Meeting with Dr. Packer
This was a day full of ups and downs, just like a rollercoaster, only this one we can't get off when we want to.
We caught a cab this morning to the hospital. After waiting in the lobby for a little while we were met by Heather (Dr. Packer's nurse practitioner) and Dr. Packer himself. Dr. Packer examined Abby, doing all the neural-type tests (hold your hands out, squeeze my finger, retrieve this toy, etc.) Abby did well for him.
Packer promised to have his pathologist and radiologist look at all our data. He does have a treatment protocol that he would recommend to us involving radiation and chemotherapy. He discussed Abby's condition with us at length, never making us feel rushed at all.
He also told us that the information we had been reading about ATRTs being very hard to treat probably referred mostly to tumors in very young children. ATRTs are a "new" tumor, meaning that they have only recently begun to separate them out and catalogue them separately from other PNETs. Since new data has been coming in, he said he is optimistic that treatment protocols similar to his can yield good results in kids Abby's age. Of course, with cancer, there are no absolutes or 100% certainty. God is good, though.
He expressed some concern over her postoperative MRI scans, and promised to have his radiologist look at them and he would get back to us later in the day. He also asked that we see if we could have a block of tissue sent to another specialist in Philadelphia to confirm the tumor's ATRT status, since the slides we brought with us did not have all the proper stains.
We started to leave the hospital when Abby began complaining of some dizziness, and then she tried to throw up. This, of course, is quite frightening to us now, since dizziness and nausea is one of the key indicators of a seizure. She didn't lose consciousness, though, but just wanted to sleep. Our nurse here at CNMC didn't seem concerned, especially when we explained how tired we all were, we had had the stomach flu, etc.
We decided to return to the hotel and let Abby nap for a while, then eat some lunch and try some sightseeing.
The first wrinkle there was that the shuttle to the Metro doesn't run during the day. Oops, I misread the sign. So we got to catch the bus, which worked fine, and the kids were all excited about that. We took the Metro from Tinley Park to the Metro Center station, and changed trains there to the Blue line to reach the Smithsonian Metro stop. Upon our exit, we discovered quite a todo on the Mall--the new World War II memorial is being dedicated on Memorial Day (boy have we been out of it), and the whole Mall area is in a tizzy. Barricades and portapotties everywhere!
A 15 or 20 minute walk later and we were at the National Air and Space Museum. Wow! We really wanted to do this for Josiah. He has been so patient and kind to Abby, and other than a few spats between the two of them it has been great to have him with us.
We enjoyed the museum greatly but unfortunately, Abby's dizzy spell seemed to come and go. She has complained of tiredness often. Amy and I carried her for much of the walk to NASM and also inside the museum some.
The worst part of the day, though, came when Dr. Packer called to wrap up his analysis of our data. He believes that we have not resected the entire tumor, and that there is still a significant amount left in Abby's brain. This was quite a shock to us, because Dr. Shafron was very happy with the surgery and was almost certain he got it all out. Packer recommends a second surgery before we begin treatment.
So instead of clarifying things, this trip has really muddied the waters. On the one hand, we have a good, tested (somewhat) protocol that we could use for treatment. The protocol is not without dangers, but it gives us a good chance. On the other hand, now we must consider a second surgery, and this one is almost certain to have some neurological aftereffects that will require therapy for Abby to overcome, if they even can be.
Our next step is to have another MRI done to see if what Packer and his radiologist sees on Abby's post-op MRI is more tumor. That MRI might not really tell us anything. I started to arrange appointments for an MRI and with Shafron for Thursday.
And Abby's dizzy spells? What about that? I called her neurologist tonight, and it might just be that her meds are out of whack. She seems to be recovering from each one well. They don't have the symptoms of a full seizure. So it seems best to just come home tomorrow and not to try to get her admitted to CNMC to be checked our more thoroughly.
So ends our day. It's hard to see God in what's going on. If we hadn't come, we would never have even considered a second surgery. But Paul says "keep the faith", and so we are trying. Please continue to pray for us about these things, and pray for a successful trip home tomorrow.
On a lighter note: Josiah's favorite part of the day? "The trains." Abby's favorite part of the day? "The butterfly." (see photo) What a reminder and a lesson for us. They live in the moment so much, appreciating exactly what they see and experience right now.
We made it safely to DC after a hair-raising experience at the airport--we arrived about 2 hours before our flight and stopped for breakfast after checkin. After finishing the meal we proceeded to security and discovered a line with probably 300 people in it. The line was not moving. Fortunately an astute TSA person waved us to the other concourse, saying there was no line at security there (not for long, of course a good 50-100 people sprinted down the concourse after he said this). We waited another 20 or so minutes with the concourse B line inching along and finally completed the security check with about 12 minutes to spare before our flight.
I'm really telling this story because it is an example of how God is faithful even in the small things. As we left the checkpoint, a skycap in an electric cart wheeled up and asked us if we needed a ride. He really came out of nowhere, or at least as far as I could see since I was panicked and certain that we could not make the flight. He bundled us on the cart and trucked us right to the gate, where the ticket agent waved us in. They were in the process of closing the aircraft doors. We were the last people to board the flight, with 5 minutes to spare.
We've had a nice evening here in DC, meeting Michael's dad and stepmom. They came to pick us up at the airport, took us to our hotel, then out to dinner, then back to their house to examine cicadas since the 17-year cicada cycle is going on right now. Boy did Josiah get a kick out of that! Abby didn't mind handling the molted shells, but drew the line at having these gentle insects crawl on her hand.
It's almost 10:00 PM, which should feel like 7:00 PM to us, but for some reason seems more like midnight.
We had calls from the hospital today confirming our appointment and moving it up a half-hour. We'll catch a cab to the hospital tomorrow morning.
Run in England
God is continually working
I just wanted to share a bit of good news I learned today. Some of you know that I have been taking classes from University of Phoenix Online so I can renew my certificate. I had until October 12 of this year to complete my last 6 hours of class (which I had planned to do this summer). I corresponded with someone from the Department of Education and found out that I can let my certificate lapse until October of 2005 and renew without having to meet the current certification requirements. So, God may allow me to keep my certification after all.
Also, I was reading in the Word the other day and these verses touched my heart. Maybe they'll encourage you all today.
Psalm 111 (NLT)
1 Praise the LORD! I will thank the LORD with all my heart as I meet with his godly people. 2 How amazing are the deeds of the LORD! All who delight in him should ponder them. 3 Everything he does reveals his glory and majesty. His righteousness never fails. 4 Who can forget the wonders he performs? How gracious and merciful is our LORD! 5 He gives food to those who trust him; he always remembers his covenant.
6 He has shown his great power to his people by giving them the lands of other nations. 7 All he does is just and good, and all his commandments are trustworthy. 8 They are forever true, to be obeyed faithfully and with integrity. 9 He has paid a full ransom for his people. He has guaranteed his covenant with them forever. What a holy, awe-inspiring name he has! 10 Reverence for the LORD is the foundation of true wisdom. The rewards of wisdom come to all who obey him. Praise his name forever!
Wow! EVERYTHING He does reveals His glory and majesty...His righteousness NEVER fails...He ALWAYS remembers His covenant...ALL He does is just and good, and ALL His commandments are trustworthy...
God is good. It looks like our flights are going to be covered by an organization called Mercy Medical. We are leaving at about 9:00 AM from Phoenix and getting in to DC about 3:45 PM on Monday, and departing DC at about 4:30 PM Wednesday, landing at about 6:45 PM.
These flights are perfect for us, allowing us plenty of time to see the doctor, and also take Josiah and Abby to see a couple of DC sights.
We will be staying at a hotel in Georgetown.
Off to DC [www.soc-neuro-onc.org]
God seems to be leading us in the direction of Washington DC. We received a call from Dr. Roger Packer's office. He is at the Children's National Hospital in Washington DC. I found some information about him online (see above link). He comes highly recommended from several sources.
Our appointment is at 8:30 on Tuesday morning. We will be seeing him in person (sometimes these guys have you see one of their research team members). He will examine Abby, then have his radiologist and oncologist look at her MRI's, CT scans and pathology slides. They will not have the ATRT diagnosis before they look at the evidence so it will be a true "blind" second opinion. Then, he will meet with us and tell us his diagnosis and treatment recommendations. I get the impression the meeting will not last long.
God has been so great with this part of our journey. First, when I spoke with Heather (Dr. Packer's Nurse Practitioner) she said the soonest we might get in to see him is June 1. After I expressed concern about waiting, she put me on hold for about 5 minutes. She came back on and said she cleared a spot for us on Tuesday before he leaves town on Wednesday. Second, our case manager with Cigna said that Dr. Packer is on their approved list so insurance will cover the appointment. Third, Children's National Hospital has a concierge service that helps arrange accomodations and transportation for out of town patients. Our social worker at Banner Desert Hospital here is also helping with that. We have been told that an organization called Mercy Medical will handle our transportation for free. They are also finding us accomodations within walking distance of the hospital.
We are so thankful for the way God has worked out this situation. Thank you for your prayers. You can pray specifically for a safe trip. We think we'll be leaving Monday and returning Wednesday. You can also pray that Abby will continue to recover quickly. She caught a cold so she's a little more worn out since she's fighting that off. We will be taking Josiah with us. Our Child Life Specialist at the hospital said that families dealing with cancer seem to do better when the well siblings are included in the care of the sick one. Pray that our time together will be a special time for the 4 of us. Pray for my parents and any other family and friends who will be caring for Daniel and Elizabeth while we are away. Pray that Daniel and Elizabeth will stay healthy...Elizabeth is VERY crabby today :)
On a lighter note...we haven't said much about Daniel through all of this. He is our 2 1/2 year old. You never know how much toddlers absorb what's going on around them, but he showed us this morning that he knows the importance of prayer. Josiah prayed at breakfast thanking God for the day and the food etc. When he was done, Daniel looked at Josiah with a very stern look and said, "Josiah, you forgot to pray for Abby!!!" Thanks to you all for being like the persistent widow asking God continually to heal our Abby. Here are some words from a dear friend of ours. May they be an encouragement to you all as you pray on our behalf.....
"On the spiritual battlefront, the scripture that keeps coming to mind is the parable of the persistent widow. She goes to the king over and over and over again until the king gives her what she asks. Jesus uses this to illustrate a point. God wants us to come to him persistently with our requests, not because somehow we change His will, but because He takes great pleasure when we seek him with great persistence, recognizing He is exceedingly generous to those who ask. I want you to know that Jennie and I take this attribute of God very seriously, and will be presenting our requests(and have already started) with a persistence that would make most people do anything just to keep us from coming back. Praise God He takes pleasure in this! Abby is going to be presented to the King with all she means to us and all that we know she means to Him, that we so much want her fully restored to health. Also that we fully believe if God is willing she will be made well. God already knows how much we want her here with us, but know for sure, He is going to hear it a lot more very soon. "
Some encouraging news
Rhabdoid Kids Site [www.geocities.com]
What a day. Praises and prayer requests abound.
First, the praises. We came home. What a great praise. Thank God we are home.
On the drive home from the hospital, I asked Abby what she missed most about being home. She said "I miss Josiah, Daniel, and Elizabeth." What joy that brought to my heart. Thank you God.
She also said she was glad she didn't have to pick her menus anymore. So I told her "no problem, we'll just tell you 'here's what's for dinner!'" :-)
Third praise: the bone scan is negative. That's a lesson for me from God I am sure. Scripture says not to borrow trouble, each day has enough trouble of its own. (Matt 6:34) This is a good memory verse for me.
Now the prayer requests: We met with Dr. Panchoosingh and Dr. Abella (I'm starting to think of them as A&P :-) ). The diagnosis came back as an Atypical Teratoid/Rhabdoid Tumor, or ATRT. This is an extremely rare type of tumor, highly aggressive, and resistant to treatment. There are survivors of this type of cancer. If it does not respond to treatment, however, Dr. Abella's words were "12 to 18 months is a good run."
So please, please keep praying. We already have so much to give God the glory for. What a wonderful testimony it would be to His power if He would heal Abby of this.
Still no results on Bone Scan or Pathology
Originally, the Banner Desert pathologists were not able to reach a consensus about the tumor. They thought it was probably a PNET, but decided that they needed to send it out. It went to Dr. Michael Hart at the University of Wisconsin. That was last Wednesday, I think. He has sent some results to the hemocs, but not a final diagnosis yet.
I know that Scripture says so many times to not be afraid, but I've been so scared today. Nobody seems to want to talk to us about the bone scan. They have kept saying "wait until we can all get together."
Pastor Mark came to chat pray with me today while Abby was taking her afternoon nap. It was good to pray with him.
One of Amy's friends who is a cancer survivor wrote to us the other day that what often appears to be a setback is just God rerouting your direction because He is working out His plans. That has definitely turned out to be the case with Abby's extended hospital stay. We've been able to get two things done here that would have required outpatient work otherwise--the balancing of her meds, and a bone scan.
We went for the bone scan today. It was the easiest of all the tests we have done so far. Abby was only scared for the injection of the radioactive dye that they use for the scan, and it didn't even hurt since she still had the IV access in her arm.
Hopefully we will have the results soon.
Abby had some of her friends come and play with her today at the "Froggy Playground" at Banner Desert. It was a much needed relief for her, and us too.
Well, we have what we think is a timeframe for Abby's stay in the hospital. We saw both her neurosurgeon (Dr. Shafron) and her neurologist (Dr. Hadden) today. Dr. Shafron still believes that the seizure Abby experienced yesterday was her brain reacting to the surgery. He says the CT scan they did late yesterday looks quite normal with some swelling and little bleeding. As far as he is concerned, Abby can go home anytime.
Dr. Hadden looked at the EEG (reads brain activity) and said it looked like a brain in a post surgery state. He wants to keep her in the hospital probably until next Wednesday. This will allow them to increase her dose of Keppra (the long-term anti-seizure medication) to what it needs to be and pull her off the Dilantin (the current anti-seizure medication). Keppra tends to cause drowsiness (which supposedly goes away eventually) so they can't increase the dosage too quickly.
Abby took the news pretty well. She wasn't as sad as she was last night. We can all pray that everything will get balanced out sooner than Wednesday and she will be surprised to go home early.
In the meantime, we'll be settling in for a few days. She is supposed to be moved to a regular pediatric room tomorrow if one is available. At that time she will be able to have visitors of all ages.
I am tentatively planning to check in at work on Monday for part of the day. You can pray that I will be able to stay focused and have wisdom about what to try to tackle. You can also pray that we'll be able to balance our family needs until Abby comes home. Finally, you can pray for clear guidance for Amy and I as we sift through all the information coming at us and make decisions about treatment.
I can't tell you all how God has ministered to our hearts through your words. Getting home at night and reading your verses and words of encouragement has been so refreshing to me. Thank you for taking the time to pray, asking others to pray, and sending us frequent emails. God has been hearing you all and we praise Him for all that He has done so far.
They have to keep her a little longer
Last I wrote, we thought Abby was going home on Friday or Saturday. On Thursday, while returning from one of several CAT scans, she had another seizure. This one was not as violent as the others, but still caused her to enter that unresponsive state, and finally just to go to sleep. They sent her for another CAT scan to make sure there was not bleeding at the removal site, that came back good. So currently the surgeeon, neurologist, and oncologist think this is just "normal" after surgery. Obviously the brain does not like being disturbed, and this is one of the ways that it responds.
The good part about this is that since it happened in the hospital, it gives us the opportunity to tune her anticonvulsant drugs under observation. The bad part is that means 3 to 5 more days in the hospital.
Followup MRI is done
Our hearts are a little lighter today, praise God. Abby had her follow up MRI today. It took 3 hours so they could reexamine the tumor location to be sure there is none left and also check her spine. The "unofficial" report from Dr. Shafron is that there is no tumor left-he got it all out and that her spine is clear. The official report should be ready tomorrow.
The oncologist spoke to us today briefly. He said they hope to have enough information tomorrow between 1 and 3, but it may also be the next day. He said additional treatment could range anywhere from nothing to a year of chemo and radiation. He couldn't narrow down the recommendation any more without the analysis from the lab. He did say that her treatment wouldn't require any additional time in the hospital beyond her recovery from the surgery.
Abby, our superkid, is bouncing back beautifully. She was prescribed up to 2 miligrams of morphine every 2 hours for pain. She has only had a total of 1.5 miligrams in all since the surgery. We even got to take her for a walk this evening. She walked herself for about 5 minutes and then rode in the wagon a while. I turned to CR and said, "Our daughter had brain surgery yesterday and we're taking her for a walk!!!" Praise God :)
She was a little disappointed to hear that the egg and hash brown breakfast she requested for this morning was going to have to wait till after the MRI (no food or drink because she was sedated). But, she gave us all a little smile. The anesthesiologist started giving her the sleepy medicine and slowly her little eyes drooped, but she kept popping them open again. He kept adding to the dose and finally he said, "I think she's out". They picked her up to take her to the MRI and she popped her eyes open again and said, "Can I eat now?" Ahh, God is good!
If things continue to go well, she'll be released to the regular floor tomorrow and then maybe one more day and she can go home.
Please continue to pray for recovery for Abby, decisions for us and also for strength. God has shown Himself so wonderfully to us this past week and we praise Him. Also, Abby is asking us all to pray for the babies in ICU-that they will get to go home soon. It is so neat to see that in the middle of all this, she is focused on others.
Surgery is done
First, let me say thank you so much for the prayers, offers of help, and good wishes. We have heard from so many people, it has been very comforting.
Abby came through the surgery extremely well. We even took her out for a walk yesterday afternoon. We are so amazed that less than 48 hours ago someone was inside her skull removing stuff that shouldn't be there. The surgeon also did an awesome job with her hair, shaving only a strip about 3/4 x 4 inches diagonally across the back of her head.
Her post surgical MRI is very good, unofficially (since the radiologist has not "signed off" on the review yet) showing no sign of further tumors either at the removal site or in her spine, which is where blue cell tumors also like to set up shop.
Our next step is with the hemotologist/oncologist, whom we hope to see today after he hears from the pathologist about the exact nature of the tumor. He did use the word "malignant" to describe the tumor. However, Dr. Shafron told us earlier that the brain is different than the other body organs--in other places in the body when you have a benign tumor removed you are done--it never comes back. Not true in the brain. There, doctors don't like benign tumors because they have much more trouble treating them. Conversely, they know how to treat malignant tumors. Further treatment will not be done during this hospital stay.
Abby could go home from the hospital tomorrow or Friday. All the drugs she is currently on (anti-seizure, steroid to control inflammation, and Tagamet to help with stomach irritation caused by the other two) can be taken orally. She had all her IV's except one removed this mornning and she is eating well. God has taken such good care of us.
They also just moved us out of Pediatric ICU to the regular pediatric unit.
I am so thankful to God. He has blessed us so much.
The Start of Abby's Journey
Abby is our beautiful 5 year old daughter, blonde hair, brown eyes, and cheerful spunky spirit.
We have been blessed with health for all 4 of our kids over the course of our almost 8 years of parenting. Except for minor respiratory issues for Daniel, our 2 year old, we had just dealt with the flu, childhood ear infections, and the inevitable winter cold season.
Thursday morning (5/6) Amy (my wife) went upstairs to find Abby in the kids' bathroom apparently "awake" but completely unresponsive. She would not answer questions or even turn her head to look at you when you were speaking to her. After calling a neighbor for help with the kids and calling me at work, 911 was called and the paramedics arrived. They told Amy that Abby's state was what you would expect to find after someone has had a seizure. Her blood sugar, however, was normal (low blood sugar is a common cause of seizures).
Abby's never had seizures of any kind.
The paramedics transported Abby to Banner Desert hospital (formerly Desert Samaritan), and I met them there. Abby was just beginning to come around, but really only recognized Amy. They drew blood for a full workup to see if she had an electrolyte imbalance, an infection, or something else.
Her coherence improved steadily in the next hour or so until she was talking and recognizing people fairly regularly. They sent us for a CAT scan. When the results came back the pediatric ER doctor took us aside and told us they had discovered a lesion in the right side of her brain. This, as you can imagine, was quite a shock to us, since neither Amy or I have any history of this kind of thing whatsoever anywhere in our families.
The ER doctor had already summoned a pediatric neurosurgeon, who had asked for the films immediately. They moved Abby to pediatric ICU (PICU). As we arrived in the unit, she had a second seizure (something I don't really ever want to experience again). They medicated her as soon as it was safe, and the seizure subsided. As part of diagnostics, they time seizures--hers lasted 11 minutes, which was quite long, they told me.
She recovered much quicker the second time (we never saw the first one), however.
Just two short hours later (at the time it seemed like forever) we met Dr. David Shafron, who is our pediatric neurosurgeon. He showed us the CAT scans and explained what we were dealing with. The lesion is about 2.5 cm in diameter, at the surface of the right rear quarter of her brain (the right parietal lobe). This is the area that handles motor control of the left side of the body in right-handed patients (we had noticed earlier that most of the second seizure happened on the left side of Abby's body).
Unfortunately CAT scans cannot tell what the area is, only that it is not normal. So at 4:00 PM that day we went for an MRI to get some more information. After those results came back, Dr. Shafron (after consulting with his partners and some other pathologists) was fairly certain it was a tumor, not an infection or a naturally occurring mass of blood vessels.
The only way to be sure what the growth is is to biopsy it. However, since (Shafron told us) there are almost no situations where you would leave the tumors in, especially in children, he recommended surgery to remove it. After they take it out they will be able to analyze it and recommend what our next course of action is (further treatment if cancerous or malignant, for example).
We've got a lot going for us. The area in question is near the surface and is not really very large. Patients often recover very well from having this area disturbed by surgery. Shafron tells us that the best indicator of how a patient does after surgery is how they are doing when they enter surgery, and Abby has been doing very well. In fact, you really can't tell she has anything wrong with her right now. Dr. Shafron is also quite well known as being very good at what he does. His practice specializes in this kind of thing.
Surgery is currently scheduled for noon tomorrow. It will last between 4 and 6 hours including all the preparation associated. Recovery time is surprisingly short--she could go home as soon as 48-72 hours after the surgery if she is walking and eating well, and if she requires no further treatment like radiation therapy.
Thanks for keeping us in your thoughts and prayers. I'll be in touch whenever possible tomorrow to keep everyone posted.