Neuro-Opthamologist Visit

Today Meghan had a 2.5 hour neuro-opthamologist appointment. Dr Tarbell wanted Meghan to see one of her collegues, Dr Rizzo. Dr Rizzo is currently working on retina transplants to give sight to the blind. I was pretty excited as Dr Tarbell said he was the best! We had been told in Buffalo that a muscle had been damaged during the seizure and this was the cause of her problem eyesight. They wanted to repair it once we were done in Boston. Dr Rizzo was incredibly thorough, checking everything imaginable. In this photo, they are building a map of how Meghan's eye responds to light in her peripheral vision.
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The result was bittersweet: Dr Rizzo said that it was not muscular damage, rather nerve damage. He explained that the nerve which controls the alignment of her left eye was causing all the trouble. The dilemma is that the alignment of the eyes needs to be so precise that a surgeon can't accurately correct it. He said that the surgery would probably not accomplish anything: All we can do is to "hope" that the nerve will repair itself on it's own. Thank goodness that we are a family that believes in the power of prayer. Meghan is able to read for 15-20 minutes before the eye can't hold the alignment and gives her blurry double vision, so we are seeing improvement. Once again, we are putting a new, specific prayer request, "Please heal the nerve within the eye so that Meghan will regain the ability to read for education and enjoyment!"

Back to Spaulding: Third Time's a Charm!

At Mass General this morning it was more music therapy--it was the highlight of Meghan's day. We think that she has more tone/pitch in her voice just from 2 days of music therapy.
At 11am we went to the playroom for Bingo. There were about 8 kids playing and Meghan won 4 of the 10 rounds. As is typical of Meghan, her first choice was a gift for Dad, and her second choice was a gift for Brianna (they are visiting this weekend) and her third choice was going to be a gift for me but I adamantly refused so she chose something for herself. Gee Sweetie, could you channel some of this luck medically????
And of course, we had to wrap up the morning with a visit from Duffy the therapy dog.
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This afternoon we were able to do Round #4 of Proton therapy but we were delayed for 2 hours as the cyclotron is starting to act temperamentally again. Will we be able to finish the week? The engineers don't feel as if they have fully identified the issue that caused the previous 8 day delay. The only other medical center in the world who owns this machine is in Japan, and they have not had the same issue. If the engineers need to work on the cyclotron, it must be on a weekend.....it takes 12 hours just to restart the machine. We could use some of your luck now Meghan!
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We were finally admitted back to Spaulding Rehabilitation Hospital for the third time. Now we intend to stay here and finish all our therapies. Our pledge: We will not be wheeled out of Spaulding again, the next time, we will skip out--with NO CANE. We had to laugh as we are beginning to refer to Spaulding as "home!" and the nurses as "family!"

Music Therapy

After arriving in the ER at 2:00pm on Sunday, we finally get to a room at 9pm. Seeing as Meghan had meningitis just 10 days ago, they put us in a room with "Precautions". This means that she might have something infectious so she is not allowed a roommate (Yeah) but she is also not allowed out of the room (Bummer). After lunch, some brave souls decided to venture into our room.....they are music therapists. I was skeptical as I assumed that they would come in, play songs for Meghan and leave. Boy was I wrong!
Laurie, the music therapist and her students spent about 30 minutes with us. They provided a variety of instruments so that Meghan could accompany them while they played the songs. Here Megs is playing the Glockenspiel. They encouraged her to use her left hand, or at least have the right hand support the left hand. It was great as she really tried hard to keep leftie in time with the music. Music is such a great motivator and it helped Meghan to push through fatigue to keep beat with the music.
Next she chose to play the drums while David played the guitar. They had a special drumstick that was weighted more at the end--especially for kids who were re-learning motor skills. Meghan was pretty successful with the left hand using this tool. How can there be such wonderful therapies out there that we don't know about? For Meghan's disabilities, music therapy is motivating and productive.
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When they realized that Meghan only uses one vocal tone, they began encouraging her to sing along with them, varying the pitch as they went. I feel that for Meghan, encouraging her to reach different pitches within music would be a powerful tool in helping her tone return. Meghan really enjoyed herself and we will be seeking out Laurie and her music therapists during Proton radiation.
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Finally, at 6:30pm, Meghan was taken into surgery (30 hours after being admitted to the ER.) To the surprise of everyone, she refused anesthesia and opted for a local only. She detests the grogginess and side effects of full anesthesia, and she convinced the doctors that she would lie completely still during the procedure. They told me that if Meghan showed any signs of anxiety for fear, they could put her out within seconds. I knew then that Meghan would be fine as she has not shown any fear or anxiety this far. Sure enough, she got to skip the recovery room and she came immediately to the room--asking for a burrito and grapes (she hadn't eaten in 24 hours).
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Dr Butler explained that because of steroids, Meghan's incision had developed scar tissue but the scar tissue had not adhered together, so the CSF could leak out. So he cut away the scar tissue and sewed up fresh tissue. Our new prayer request is that the new incision will heal together completely without infection or leakage!

We went a week without a hiccup, at least.......

No photo today. Things happened a little too quickly:
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Meghan's incision was looking great. No sign of infection and absolutely no one was worried....except me. Something didn't look right to me: The incision was still looking "wet". I had been putting an antibacterial cream on the incision but sometime on Saturday, I lost it. I looked everywhere for it. Our nurse said that they would write an order for it, but it never came. So I can hear Joyce in my head telling me "Everything happens for a reason" so I offered a prayer that if Meghan needed this cream, I would find it. I proceed to turn our room inside out. No cream. So I went with trust and just cleaned her incision with alcohol instead. The next morning as the nurses were discussing why her head was wet, Meghan pops up with "I think that I am leaking spinal fluid". Immediately, I had a confirmation that she really was leaking cerebral spinal fluid but the nurses were skeptical, after all there was no sign of infection, just wetness. It was not until Meghan was at OT doing head inversions that we noticed drops of clear fluid dripping from her head, onto the mat. The cream was petroleum based and had previously stopped the fluid from dripping out. It was a blessing that it disappeared!
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Within an hour, we were being taken by ambulance back to MGH. We have now been admitted and are waiting to see the surgeon tomorrow. They believe that the incision, having been opened 3 times, simply has not sealed properly and the CSF is leaking out. It's incredible that there is no infection seeing as there has been an open cavity into her brain for 2 weeks. (Prayers work). So we need to modify our prayer request again: We pray that there will be an open operating room, an available anesthesiologist and that the neurosurgeon will have time on his schedule to fit her in tomorrow. We pray that this will be an uncomplicated and timely procedure and that we will not be delayed in either Proton Beam or therapy.

Note to friends

Not much news over the weekend, so a note to my friends:

Amber: I liked your quote. Try this one, it is you: "Alter ipse amicus"
Mallory: Funny that the sub thinks you talk too much. The nurses here say that I am a chatterbox. They must be wrong about us.
Riley: I am getting better. We have to see Eclipse together in June!
Dolores: My Mom says that Cheddar Bunnies are 1,2,5 and therapy is 1122334455. Can you come and have another sleepover?

Only 26 treatments to go.....

So the week ends with us having completed our first 3 rounds of radiation, only 26 more rounds to go. Meghan's incision is still improving although they are not willing to remove the stitches yet. The weekends get a little boring, so we have to occupy ourselves in other ways............................
Meet BOB! Meghan's constant companion is an IV pole. She has been calling him "Bob". Even the nurses now call him "Bob". So tonight we decided to turn him into "Bob". She had all the nurses laughing at her creativity. This is what happens when you put a Destination Imagination kid in the hospital and you show them where you keep the scrubs, gloves and sheets.

The Harlem Globetrotters visit

OT is working specifically on the function in Meghan's fingers...playdough is a great choice as is requires some minimal strength to manipulate the dough. Meghan laughed and told Anne, "I do playdough with my cousin Cooper, and he's 2 years old!" There is some truth to the adage "Play is child's work".

Kim, from Child Life, gave Meghan her choice of activities......she chose to play MarioCart on the Wii. And then she had her nails painted because Brianna, who normally takes care of Meghan's manicure needs, won't be here for another week!

The Harlem Globetrotters came for a visit. Hot Shot, pictured with Meghan, told stories and did tricks with the basketball that had everyone in stitches.

He then pulled Meghan out of the audience and spun a ball on her index finger. He's holding her finger at the precise angle for the ball to stay there spininning. We are very grateful to wonderful people to volunteer their time for these kids! There's no media coverage, or recognition at all. Hot Shot came alone, just to entertain these kids. (Ok, he came with a New England Patriot but Meghan and I are a bit clueless on the sports angle).

We have to end with a sincere "Thank you" to everyone who is sending Meghan notes, gifts and blog comments. It is so touching to know how many people care about her. This evening was like Christmas. Thank you so much for the gifts that have so much thought behind them: Books on tape, thinking games, a card holder (a substitute hand), stuffed animals activities to strengthen her, even a sweatshirt for the snow that we had today. We are reminded daily, just how much there is to be grateful for in life.

Prayers are answered!

I woke up this morning with a positive attitude that we would handle whatever came our way today...with gratitude. It worked! I found that I was genuinely grateful that we had caught this infection before it turned into anything else and grateful that we were able to take care of it so quickly, and with a trusted surgeon.
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Meghan and I arrived at the hospital by 8am and we spent the next 90 minutes going through all the pre-op procedures. We were waiting in OR #3's prep room while the anesthesiologist had me sign all the consent forms. There were about 8 support staff in the OR waiting for the surgeon to arrive. When Dr Butler arrived, he explained the procedure to the staff. Then he walked over to Meghan to show the nurse where the infection was, and he just stared at Meghan's head. He looked at me and said, "This incision does not look as unhealthy as it did yesterday, it lookes as if healing began over night. I don't think that I want to open it up. Let's just watch it and see if it heals completely on it's own." No arguments from me! So we left! And we are leaving the prayer request exactly as it is. Please let her body be able to heal fully from this infection using it's own inner resources. This afternoon, we headed back to MGH to begin the first of 29 rounds of radiation. A photo simply doesn't do this mammoth contraption justice. The entire machine is about the size of a house, most of it can not be seen at any given time. This is a photo of the gantry (the white rotating delivery system) but most of the work is done outside of this room. First, in a synchrotron, hydrogen atoms are separated into negatively charged electrons and positively charged protons. The protons accelerate within a vacuum tube for a determined amount of time, increasing their energy. Meghan's proton energy would be around 250 million electron volts--the amount needed to reach the depths of her brain. As the protons leave the synchrotron, they are focused and steered by magnets through a beam transport system into the "snout". The snout is visible in the photo (within the steel box) and it delivers a pencil sized stream of protons into the exact location as determined by over 40 hours of mapping by professionals. The gantry that you see in the photo, rotates 360 degrees, thus allowing the physicians to choose the least damaging entry point for the treatment. This is the main reason that we chose Proton radiation: It enters the skull at a low dose, picks up speed until it explodes in the correct location. There is no exit dose to do more damage therefore they can protect the more vital functions of the brain.

It was pretty intimidating for Meghan to be inserted into the center of the gantry but the worst part really was the immobilization device itself. She was bolted to the table so that she couldn't even move a millimeter. I could tell that she was very apprehensive about being like this for 20 minutes (the radiation only takes 2 minutes, the rest if prep-work). She couldn't breathe deeply and the mask hurt her face. But she was an absolute trooper and stayed calm throughout the entire procedure. The majority of children require full anesthesia each day because they just can't tolerate it. Meghan is truly my hero, in so many ways: She is the teacher and I am the student.

Another hiccup....don't tell me you're surprised?

Radiation was canceled again today, so Meghan and I had a nice relaxing day planned. We met with Gordon, the Orthotist, who took a cast of Meghan's foot so that he can create a custom orthodic brace to retrain her leg muscles again. He was from Glasgow in Scotland. Conversation came easily as we found heritage in common:I was born in Scotland. He told me to tell all my English relatives who read the blog, "You've probably never seen a Scot who actually works after lunch!"

Our physical therapist loves to create games where Meghan has to stand on this foam square--as it is impossible to keep stable on it. Here Meghan had to toss the turtles into a pond by kicking her feet--her aim was great but her stability was rocky. But we are moving closer to our goal of walking without the cane.

It was during PT that I noticed Meghan's incision was oozing. I called neurosurgery, and Dr Butler, our surgeon, wanted to see her immediately. He took one look at the site and went silent. He then informed me that it was not healing properly and he wanted to schedule an emergency operation tomorrow morning to reopen the wound, cut away the scar tissue, irrigate the infection and re-stitch her up again. Because of the bacterial meningitis, he didn't want to take any risks. He believes that the steroids are preventing the wound from healing properly. This will be the 4th time that this particular site has been re-opened--making healing more difficult.

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So once more, we are revising our Prayer Request: Please remove the infection from the site, and allow the wound to heal successfully.
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Am I the only one who has forgotten that we are here to fight a brain tumor? It seems as if we are fighting everything but the tumor! Yet all of these issues are indirectly because of the tumor so Meghan reminds me, "Tumor's are evil!" ..... Amen Meghan Amen.

Thank you to everyone who writes comments to Meghan. She signs onto the computer just to read the comments. Please keep them coming!

Another delay........

Radiation was canceled today. After all my mental preparation, we were notified that the Proton machine was down! It is pretty tempermental and goes down quite often, but this time, there seems to be a serious problem as it has been down now for 5 days. They have flown in the design engineers of the machine, who are from Belgium. Truthfully, this is the downside for chosing a therapy where there are only a handful of machines worldwide.

I can't say that I was particularly sad, in actual fact, I saw it as a blessing. It's another 24 hours to allow her brain to heal from the surguries and the infected meninges. It was also a blessing for us that we were only delayed in our start date. People who are in the process of radiation had to switch over to the photon machine. No one was particularly happy about this, as the parents who have chosen Proton radiation for their children have all done their homework and they know that the risks are much higher for photon radiation than for proton radiation. All of us could be doing photon radiation in our home town, we are here in Boston because we have faith in the Proton therapy's ability to kill the tumors with minimal damage to healthy cells.

So Meghan and I had an afternoon free. Luckily, Kim found an hour to play Yatzee with Meghan. Kim is the Child Life Specialist in the hospital who coordinates all the "fun" for the kids. Each morning when we wake up, the schedule for the day is posted using colored magnets to designate activities. Meghan loves to see the orange magnet on her schedule because that means that Kim will spend an hour just with Meghan. Next time, they are playing Mario Kart on the Wii.

Kim planned a visit from Beebee to see Meghan today. The therapy dogs come on Sunday at 2pm, but Meghan and I are in church at that time, so Beebee made a special trip just to see Meghan. Beebee actually belongs to a psychologist on the 8th floor, so she is well known in the hospital.

Don't pray for a lighter burden but a stronger back!

So now the hard work begins.................. The therapists have assessed Meghan's abilities, and now they have created tasks that challenge her. Their first goal, and Meghan concurs, is to get her walking without a cane. In order to do this, they have to force her to lose her balance, and get her own reflexes to "catch" her. In the above exercise, she has to balance on one foot, and punch the shells on the floor with her other foot. She topples often but Christina is there to catch her.

This is a "brag" picture. For those who have observed Meghan's left hand just hanging limply by her side, virtually useless, it was fabulous to see her working on untying her shoes.

Physical therapy had an orthodic brace made for Meghan's leg. She is dragging her foot because the ankle/foot muscles aren't strong enough to lift the toes up when she walks. This brace forces those weak muscles into the correct position for walking. Meghan doesn't like to wear this brace outside but she will wear it in the hospital to retrain those muscles. "It's only temporary Meghan".

The Young Professionals of Boston came in today to decorate Easter eggs with the kids. Meghan's buddy, Kara, was wonderful and they had a lot of laughs together. We are very grateful for the many fabulous volunteers who give of their time so generously. Our media just doesn't give enough coverage to the fact that many people have sincerely compassionate hearts no matter where you live.

Meghan had an incredibly busy day: Physical therapy began at 8am, followed by occupational therapy at 10am, speech therapy at 11am, lunch group at noon and Cognition Group at 1pm. Cognition group is where the older kids (7th grade thro' high school) get together and play team cognitive games. Meghan was on a team with a very sweet girl from China who was quite outgoing. (A good thing because Meghan isn't very chatty yet because she is still pretty difficult to understand). We had a two hour break from her IV meds and we got permission to go "off campus". Radiation begins on Monday, and I was hoping to walk there daily with Meghan in the wheelchair. I needed to know how long it would take me, so we did a trial run. The weather was beautifully sunny and about 65 degrees. Stephan and I had walked there in about 10 minutes, but it took me 23 minutes with Megs in the wheelchair. It will be quite a workout--I just never noticed those little hills before! We came home a different way, and for a treat, we detoured to Whole Foods (I didn't say it was a treat for Meghan. LOL). We did manage to pick up some fabulous organic greens for juicing tomorrow.

Even in a storm, it doesn't rain forever, and eventually the sun comes out!

When we got back to Spaulding Rehabilitation Hospital, we found that they had not technically saved our bed. This photo was the room where we had left all of Meghan's belongings but the staff had a surprise for us..........they had upgraded us to a new room.............

There is one "deluxe room" on each floor of this hospital which is reserved for private, cash paying patients who come from countries such as Saudia Arabia. It has it's own attached bathroom and shower, plenty of storage space, a built-in TV cabinet and a fridge. They felt that Meghan had gone through so much that they wanted to do something for her. WOW! We feel as if we have a studio apartment. Another blessing!

Occupational therapy was thrilled to see the movement in Meghan's left arm. This arm bicycle machine was not possible, even a week ago. OT thought that it would be weeks before she would be able to use this machine. The right arm is still doing 70% of the work--but at least the left arm is contributing.

In Physical therapy, Meghan and her therapist, Lauren, were actually working on balance and core stability. The Ring Toss game, by it's very nature, forces the body off center and the legs need to work together to regain stability-which is made more difficult by standing on foam). For those of you who don't see Meghan regularly, the left arm is usually just hanging limply at her side--unable to even tremble. So this picture is fabulous because she wanted to show Lauren that "Leftie" could throw rings too. The arm threw beautifully, although the fingers had a harder time releasing the ring at the right time. None of us cared that Leftie didn't make any accurate tosses, we were all just thrilled at the incredible progress we were seeing. All this progress has come within the 72 hours of the resevoir removal.

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We are definitely being watched over. Another day of sincere gratitude.

Even in a storm, it can't rain forever.......

With sincere gratitude, we report that Meghan is through the worst of the meningitis. Her fever broke last night, and also the head/neck ache dissipated. She finally slept well, for the first time in almost a week. It was so nice to see her sleeping peacefully, without wet washcloths over her eyes, around her neck and soaking into to her PJs. She woke up, ate a good breakfast and asked if she could join the other kids in the Resource Room to play St. Patrick's Day BINGO. She even won a "Life is Good" hat which she wore all day today. The three of us agreed: "Life is really good for the Kleinleins".

After lunch, she went back to the Resource Room where Mrs Free was making holiday crafts. What wonderfully kind and patient volunteers are in the hospital. Mrs Free was Meghan's left hand so that she could complete her craft while the doctors spoke to Stephan and I.

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We have had 3 blessings today. The first is an answer to prayer. The Rickman Resevoir was growing a bacterium--a particularly stubborn one, so Infectious Disease immediately changed her IV antibiotics as the current protocol was not killing this bacterium. We are grateful because this knowledge guarantees success.

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Our second blessing was the news that the fenestration of the tumor (removing the fluid) was a success. The tumor is now 60%-70% smaller thanks to the ability of MGH to have very specific tools like the metallic cautizer, and the skill of the surgeon who used that tool so effectively. The tumor is unable to heal the hole that he burned, so the tumor walls collapsed in on themselves. (the body is so amazing that the tumor will manage to eventually heal itself). The surgeon told us "I haven't changed anything on the microbiology of the tumor itself but in removing the fluid, I have set the brain up for healing." Thank you for guiding us to this man. We both feel that we have been led to Boston: The medical resources here are fabulous when you have a complex brainstem glioma like Meghan's.

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Our third blessing is a more subjective one. We removed the Rickman Resevoir because the consensus was that it was the source of the meningitis. Yet 24 hours after this surgery, Meghan has been able to lift her left arm to shoulder height, and she is able to lightly grasp items with the left fingers. This is truly a miracle. The neurosurgeon felt that it was probable that the catheter which extended into the third ventricle, could have been contributing to the left side weakness. Daily, we ask for divine guidance to make decisions that are in Meghan's best interest. In retrospect, if we had made different choices, we might never have removed the resevoir--and Meghan might have been left with some left-sided weakness that we would have attributed to two seizures and a myriad of brain surgeries. The moral of the story is to ask for divine guidance, and then trust your heart--even when it's not logical.

Our final good news of the day is that we were discharged today, and we were immediately transfered back to Spaulding Rehabilitation Hospital . So yes, blessing #4 was that they saved our bed!).

This is perhaps the first ambulance ride where Meghan, Stephan and I are completely at peace!

We are no longer in isolation! And just in time for a visit from Duffy! Duffy is a therapy dog and he comes each Tuesday to the Pediatric Cancer floor. Meghan misses her pups at home, and it was nice to have a dog to rub and snuggle with.

It was another rough night. These awful headaches are debilitating and poor Megs just lies with a wet rag on her eyes. We are learning how to offset the migraines: Catch the headaches while they are coming on, and hit them with some serious dosage of narcotics.

We are hopeful that our prayers are being answered. The microbiology lab says that something is growing on the Rickman resevoir. They are unable to identify it yet but they will be able to categorize it within another 24 hours. This has surprised everyone because both of Meghan's antibiotics are the strongest broad spectrum ones available. No one thought that anything would able to grow after 5 days on this protocol. Will this explain why we can't seem to improve?

Daddy and Daughter at the end of the day. It just doesn't need any more dialogue!

Have your ever genuinely felt that you were at your tolerance limit? Oh, we have joked about it before. But today, we just might be there.............................

Our doctor came in at 6:30am to tell us that Meghan was scheduled for an emergency brain surgery today. This is #5 for this little girl. Over night, they decided that the Rickman Resevoir, that was placed in her brain in January, was infected. This resevoir was to allow a surgeon quick access to the third ventricle, in the event that hydrocephaleus occured again. In reveiwing their notes, they recalled that the ER doctors were unable to draw fluid from it. The only logical conclusion is that it's infected.

At this stage, Stephan and I agreed to allow them to remove it. We have no conclusive evidence of any bacteria or virus growing in her blood. It will be another 36 hours before the spinal fluid culture returns, and Meghan is getting worse--even after 5 days on 2 of the strongest IV antibiotics they have. They don't think that she will heal until this foreign object is removed from her brain. It really does seems to be the only logical choice. Although there is no infection in her blood, there must be infection contained within the sacred sanctity of her brain/spine.

Our prayers shift again: Please give us conclusive answers so the doctors can treat her accurately.

No photo today. There's really nothing that you want to see anyway. Meghan has taken a serious turn for the worse. Even with fever medicines, we can only keep her temperature stable at 102 degrees. Her headaches have reached migraine status and her neck stiffness is so severe that we have to turn her manually as she can't do it herself. It's pretty frightening. She doesn't speak to us unless she has to because even the talking hurts her head. Every 10 minutes we are replacing the cold washcloth on her neck and forehead. Even codeine is not doing anything for the headaches. Still nothing has grown on the culture specimen.

They decide to call in the Infectious Disease Team.

After a thorough examination, they are convinced that she has meningitis of the brain. They just don't know if it's bacterial, viral, or chemical. We agreed to let them do a spinal tap.....neither of us looked during the procedure, it was more that we could handle. At least they were able to get some spinal fluid, now we have to wait while they culture this fluid.

It was a tough night. Stephan and I split the night in half: I took until 2am and he took after 2am. We just stayed awake, cooling and rotating the washcloths and helping her to move when needed. At 2am, I finally asked for more serious narcotics (you know it's bad when I ask for drugs!). At least the drugs brought her the ability to sleep, somewhat, in comfort.

Meghan's was allowed to shower and wash her hair for the first time since her surgery last Monday but we are in isolation, so we are not allowed out of the room, so the nurse brought the shower to Meghan's bed!

So far nothing has grown on any of our culture specimens: No virus! No bacteria! What is causing her 104 degree temperature spikes?

Play the video to see a gift that made us laugh (click on the play icon)

Thursday started well. Meghan is taking a lunch break from all her different therapies.......and enjoying one of Mom's delicious vegetable/fruit juices. (No comment from the peanut gallery). But she had been struggling with a headache for most of the day. MGH really wants to taper her off the steroids, so they proposed a 50% tapering schedule each day. My gut intinct told me that this was too fast and I contemplated speaking up but my strong desire to get her off these awful drugs overrode my intuition--a decision that I would come to regret

By 6pm Meghan spiked a fever of 104 degrees. She was taken by ambulance back to MGH where we were in the ER until 5am, running every test possible. They even convinced me to allow them to attempt to pull brain fluid out through her resevoir from the third ventricle. After 5 failed attempts with a needle in her skull, I asked them to stop. Obviously the third ventricular ventriculostomy which was done in Buffalo, was a success, as there was no accessible fluid in the resevoir.

We were taken to a room where Meghan was isolated. She was required to wear a mask in the corridors of the hospital--at least Puddy was gracious enough to wear a mask with her! She also has a stiff neck, which is adding to the concern because these signs could suggest bacterial menengitis in the brain. So now we wait for cultures to grow so that they can identity if specific bacteria are causing this unpleasant little trio. The doctors are pushing to do a spinal tap (the only way to detect menengitis) but Stephan and I want to wait a little longer to see if any of the 3 symptoms break. My gut tells me that this is viral, but only time will tell on that one! Yet if we stay here too long, we will lose our bed in the rehab hospital.

So we have updated our Prayer Request. The eyes were important but now there's something more worrying.

Wednesday was our first day at Spaulding Rehabilitation Hospital (the building behind us). We had another trip back to MGH before therapy began as they need to re-run all the mapping testing as the tumor is now a different shape. So after a morning of IVs, contrasts, head masks and CT simulations we are now ready for a relaxing afternoon of physical, occupational and speech evaluations.

When we check into rehab, Meghan seems a little depressed. Initially she thought she was being discharged to the Ronald McDonald House (it's not home, but it is a good substitute). The rehab hospital, was exactly like a hospital....pretty sterile. So I tried to cheer her up by looking out the window and saying "Hey Megs, you have a great view, if the Bruins are playing the lights are blue and if the Celtics are playing the lights are green." She was slightly sarcastic in her response, "Yep, it's nice Mom, the view from my window is a Beer Ad!"

One of the main benefits of being in a rehab hospital is that they have all the props needed for success. Meghan can't move her left hand--gravity wins each time. So they strapped her hand to this little "car" and suddenly the muscles in her left hand are firing as they put the "car" sideways and back and forth. Getting the muscles to fire on their own, is the beginning.

Speech and Language gave us some good news too. The first test that they did with Megs was a cognitive processing test to see how much information she has retained from before the seizure. The pathologist, Becky, says a word and Meghan had to point to the picture that correlates to the word. Towards the end of the test, the words were getting really tough (Stephan and I didn't know some of them). Becky told us that Meghan scored the highest possible--she has the vocabulary recall of an 18 year old. It's a lot easier to retrain muscles as opposed to try and open cognitive pathways.

We are not really happy to be in a wheelchair (and I do mean "we"). Little Italy is a mile down the road but Meghan can't leave the hospital grounds until she can walk without assistance. Instead of seeing brick stone streets, Italian restaurants, gelato stands, and Italian bakeries, we came to see the geese on the grounds. So she said "Why I am looking at stupid geese?" We laughed because this comment was so out of character for Meghan, then she added, "Stupid geese bit Mallory". Even geese play a role in motivating Meghan to get stronger so she can have some freedom to expore Boston.

Sorry, no photo today. We left the camera at the Ronald McDonald House and things happened so quickly today that we didn't return to get it.

This morning, the doctors decided that Meghan was doing so well that she was ready to go from the PICU to a regular floor. What great news. The last time we were in the PICU, we stayed there for over 2 weeks. Within 2 hours we were notified, that they had decided that she was well enough to be discharged from the hospital entirely. WOW! Fabulous. One hour later, we were admitted into Spaulding Rehabilitation Hospital. Unbelievable! After our Jan/Feb hospital stay, we couldn't get any rehab facility in NY or in PA to accept us. Stephan and I commented, "God must be shutting the wrong doors so we don't inadvertantly go through them." Yet when God wants a door open, it opens quickly. For 6 weeks, nothing has happened for Meghan, and suddenly:

* She gets accepted into a top Proton radiation program that only accepts 20 kids worldwide
* We get the most experienced Proton doctor, Dr Nancy Tarbell, who hand selects a few of those 20 children to personally monitor. (She is now a Dean at Harvard Medical School).
* A pediatric OR opens up for Monday morning, at 3pm on Friday afternoon.
* The head of neurosurgery at MGH agrees to personally perform Meghan's tumor fenestration using a metallic cauterizer--a tool with which he is the most proficient and people come from around the world for his expertise and experience.
* Meghan's brain doesn't bleed after the procedure--very rare
* Meghan heals so quickly that she is released 24 hours after brain surgery.
* She is admitted into a rehab facility, with insurance approval, within 2 hours of the request.

Can there be any doubt that we are in the right place, at the right time, with the right doctors? This is the door that God wanted us to pass through. Yes, it will still be a long road, but finally, we are on the right road. We are sincerely grateful to be led!

After our MRI on Friday, we found that this rotten tumor was still growing. The doctors expressed concern that during radiation the tumor could swell and cause Meggie even more undesirable deficits. At 3:30pm on Friday, the neurosurgeon, Dr Butler, suggested an emergency aspiration of the tumor. His secretary confirmed that there was a pediatric OR open at 10AM on Monday morning--even though the pediatric ORs are usually booked 10 days in advance. What a blessing!

Meghan entertains herself by looking at the photos on "her" blog while in the OR prep room. Even at this point, Meghan is unbelievably peaceful. She trusts completely!

Minutes away from the surgery, the anestheisologist is waiting to put Meghan under. The surgeon is going to use a metallic cauterization device to burn a hole in the tumor, so that it cannot quickly heal itself. Then, as it tries to rebuild itself by depositing fluid inside itself, the fluid will just leak into the brain where it will be absorbed. This should buy us 6 months of time to get this tumor under control. Hopefully, Meghan will regain some of the lost functions. The surgeon did tell us that this procedure will cause bleeding in the brain and she will need an external drain until the bleeding stops.

About an hour after surgery, Meghan is starving. They give us permission to give her some sugared juice but, typically, Helena is feeding her a high protein nutrition drink from Whole Foods. Some things never change! Notice that there is no drain from her brain. The surgeon was very surprised to find that there was no bleeding from the site, so he decided that a drain was unnecessary. Another great blessing. Thank you.

About 4 hours after surgery, Meghan want to try and walk. She is doing incredibly well and manages one turn around the PICU floor. At this point, we believe that part of the tumor has collapsed in on itself but it will be a while before we know what functions she will regain. Those brain cells have been under severe pressure from the tumor, and will take a while to recover. Still, we are praying for those beautiful blue eyes!

As we prepare for Meghan's Proton Radiation, the first thing they need to do is to create an immobilization device. First Meghan is placed on a head and neck support.

Next, they place a warm piece of mesh over her face. Using their fingers they mold every part of the mesh to her face: Eyes, nostrils, ears.....the mold is an exact fit.

After drying time, the mold is an exact replica of her little face--steroid cheeks and all! (Yes, they will need to remake the device when she is tapered off those steroids.)

Now we head to the MRI machine. This is a nasty process for Meghan. It's two hours inside this claustrophobic machine that sounds similar to a jack-hammar. She must not move at all or the images would not be accurate. They use a helmet and pads to isolate her head.

Finally the CT scan. This is a much shorter procedure but much more confining. Using the immobilization device, her head is bolted to the board and her body is confined also. These images will be merged with the MRI images to get a 3 dimensional image of the tumor that they will map out the radiation beams. Accuracy is essential.