Wednesday, July 29, 2009
Today marks 2 weeks- 2 weeks seizure free, 2 weeks tumor free, 2 weeks of healthy life for Aggie and relief for all of us who love her. She really does seem like HERSELF again, and the real, healthy Aggie shines so brightly right now you can't help but rejoice. We are standing in front of Niagra Falls, watching the love and mercy of God pour down on our family.
Do I dare enjoy it? Do I dare let myself love this new healthy Aggie? What if she goes away again? For a couple of days after the surgery I tried to keep my guard up, to guard against hope and joy just in case it wasn't going to last. But in just a few days her sweet laugh penetrated that flimsy wall, and now I just praise God for her and love her.
I cried tears of gratitude and relief that day.
The next day we got the pathology report.
The tumor is a slightly nastier kind than they first suspected. It is a Grade 2, not a Grade 1. Grade 1 tumors typically can be completely removed, and if the seizures go away, the patient is considered cured. Grade 2 tumors are more likely to come back.
It is possible that the neurosurgeon got all the tumor, and if he did, it will not come back. But if he missed just one tiny cell, it will multiply, and it is likely to come back with a vengeance. If it comes back, we will hope surgery is a possibility again (it depends on where in the brain), and at that point she will also need chemo and radiation.
As God would have it, Aggie's neurosurgen happens to be one of the best on the planet, and he also happens to be one of the very few who has ever worked with her particular type of tumor. (Her chances of having this kind were literally one in a million.) Even he has never worked with a child with this kind of tumor, so in short, her long term prognosis is uncertain. She will continue to need MRIs every six months. If nothing comes back in the next ten years, she will be considered cured.
So I only have to hold my breath for ten more years!
We have healthy, happy Aggie back, but the shadow still lingers over our home. And we have learned that we just can't live holding our breath all the time. We have been living with a threat like this with epilepsy- just because it has changed its name to 'tumor' doesn't mean it needs to be scarier. So Aggie is mortal and we don't know her future. The same can be said of any of the kids, really. God is in control- it is not our job to know what lies ahead but to do the works of love he has given us today.
We still hear the thunder rumbling in the distance a little bit, and we are not quite sure if it's the storm leaving or another one coming.... but for now, we will thank the Lord for the sunshine.
God has been faithful to carry us this far. He will be faithful, no matter what the future.
Friday, July 24, 2009
Aggie loves her cards, gifts, and good wishes from everyone! And I think Lorraine has it pretty good too.. she gets to share some of the goodies without the hassle of the surgery!
9 days seizure free and we are thanking God for each one of them!
I waited patiently for the Lord; he inclined to me and heard my cry.
He lifted me out of the slimy pit, out of the mud and mire;
he set my feet on a rock and gave me a firm place to stand.
He put a new song in my mouth, a hymn of praise to our God.
Many will see and fear the Lord and put their trust in Him.
Tuesday, July 21, 2009
It is now 830am and my house is quiet... is this what normal homes are like? Obviously Marcus is still away (so is Seth)- the other kids are actually sleeping in!
Aggie is still doing great. Yesterday she and Lorraine were running and playing, dancing, even jumping on the beds (until I caught them that is!) We all kind of cringe to see her so active with that big scar on her head, but she hasn't complained about it at all!
Still no seizures so far.... though I can't say that means the anxiety is gone. Actually it takes several months of seizure freedom, followed by a normal EEG, to say she is really cured of epilepsy. (They think it is 65-70% likely in her case) Of course we hope and pray that the tumor was the culprit, but it may have been just one factor. If her seizures do return however, chances are better that they will be controllable by medicine now that the tumor is out.
Regardless, she has greatly improved, and we are definitely enjoying these seizure- free days! The boys will return at the end of the week with Grammy and Bump (we wanted to give her a few more days to recover before bringing THAT kind of energy into this house!) Lorraine is back home and we are enjoying a visit from my parents until tomorrow.
We met another for year old with epilepsy at the hospital- when he was a baby his parents were told he would never get out of a crib, never walk or go to school or play like a normal child. These parents researched everything, and traveled several days to meet with the best surgeon on the planet (the one Aggie had) and had his temporal lobe removed. He is now doing fantastic, only a little bit behind developmentally, but otherwise tremendously improved. When we were checking out of the Ronald McDonald house the other day, the manager told me that a new family had just checked in: they have four children under the age of six- three with epilepsy. And we thought we had it rough! But Cleveland is a place of miracles... I pray they find theirs too!
Saturday, July 18, 2009
Here she is napping in the van while we drove around town filling prescriptions and whatnot this afternoon. She certainly has some battle wounds. The ones on her head are from the clamp during surgery, and she has tons on her arms and legs from IVs and blood draws. I haven't counted because she won't sit still enough.. but I'm guessing she has at least twenty. We call them "polka dots" and she doens't seem to mind them at all.
When they let us go from the hospital I saw on her discharge papers "Activity restricitons: none." I said to the nurse, "Are you serious? She can really go on the playground, ride a bike, whatever?" She said "She sure can! Just don't let her rub mud on her wound!" So all we have to do is keep her from mud (and out of the water for six weeks)- other than that she can be a normal kid again!
Tonight Aggie and I played hide and seek for a good hour in the beautiful garden at the Ronald Mac Donald house. (Her wound is itching a little bit) I got to see that big Aggie smile dozens of time... and her eyes look almost normal again.
As soon as she was free of her wires she wanted to go down to the play room. She is hopping, skipping, even running! I keep saying "slow down kid, don't you realize you just had brain surgery?"
Friday, July 17, 2009
Here she is having a tea party. Bump was able to get quite a few laughs out of her!
There was some pain mixed with the joy of that day. Aggie’s labor was definitely the hardest . My body ached from 11hrs of back labor with no drugs, and my heart ached for Josh who was in Iraq instead of there snuggling her with me.
When Aggie was born, the medical world that she was born into seemed almost irrelevant. I felt like really, I had done all the work getting her here. The midwife caught her and cleaned her up, and it seemed like that was about it. Most of the credit went to God who made her, and who made my body in such a way that it could keep her safe and fed while she grew, then get her out when she was ready.
And when it was over, I know every mother understands this feeling- I felt like we had just gone through the hardest thing ever, my little one and I … yet there in that recovery bed, it was nothing but the sweet smell of newborn skin, warm snuggles, relief, and the sleep of happy exhaustion.
In this bed, we also have exhaustion, joy and relief. The pains of brain surgery and everything that went with it were far greater than a mere eleven hours of labor. And so, the recovery will be slower, for my little one and for her mother.
This time, the world of medical professionals is anything but irrelevant. We lay here in an enormous hospital (19000 employees!) We have to be careful how we move in this recovery bed- there are wires everywhere- wires that help her care team monitor her heart, lungs, blood pressure, oxygen level, tubes that keep her hydrated and medicated as needed- wires and tubes that are making her recovery from epilepsy possible.
Fifty years ago, Aggie’s story would have been so much different. The technology that pinpointed the problem and made it possible for them to get the tumor out of her simply was not there. Fifty years ago, we would have had very little hope for her future. It is likely that we would have been helpless as she got progressively worse and finally died.
Here in this recovery bed, I do not feel responsible at all for the miracle that took place. I am praising God not for the way my body works, but for the way this hospital works, for the medical professionals of all kinds who devote their lives to research and healing. I am praising God for the gifts and skills he gave to these people, and for their willingness to use them to serve others. I am praising God for people who can handle giving screaming children IVs, emptying bedpans, and drilling into skulls, so that my baby can have a future.
There are different kinds of gifts, but the same Spirit. There are different kinds of service, but the same Lord. There are different kinds of working, but the same God works all of them in all men. I Cor 12 4-6
It is nice to have Lorraine here. This is them watching Tom and Jerry and having Popsicles together. The smile is still forced... but it is a smile!
The neurosurgeon posse came in early this morning and removed her head wrap. Her hair is matted and gross, but it is still there! We are happy they didn't have to shave much of her head!
Lorraine sure went white this morning when she saw this! But it's really not too bad considering what they did!
Thursday, July 16, 2009
Aggie dismissed her neurosurgeon with those words this morning. She is just plain ornery. Of course, she hasn't eaten in two days (they still won't let her because she is waiting to get her MRI). She's sick of her bed, sick of her IVS, sick of this room. She even took a swing at me once.. followed by an "I'm sorry mama!" and a meltdown!
But this is a good sign! It's spunk! And no seizures so far!
Thank you for your prayers- she got fantastic sleep last night and is no longer hallucinating (it was the meds thank God.) If she ever gets this stinkin MRI done, she will then be transferred out of ICU to a more comfortable room, where we plan to shower her with love and give her all the chocolate milk and pancakes she can take.
Wednesday, July 15, 2009
She had a rough time since she got out of surgery- we are not sure if it was pain, anxiety, or some sort of reaction to the anesthesia. Whatever her problem was also included hallucinations. She would talk to us some, but more often cried out saying things we couldn't understand, reaching for things, in general just plain not happy. She'd sleep for no more than five minutes at a stretch then do it all over again.
Her vitals are good, her body seems to be working as it should otherwise. We are hoping the problems are all related to the drugs.
We are breathing much easier now that the surgery is over, but we are still waiting to see what happens with her seizures. Time will tell.
Despite her unrest this afternoon, somehow she still seemed to get out one "chicken butt." Our funny little Aggie is still in there... she just needs some help through this rough spot in her recovery. Please pray for rest and peace for her tonight. Maybe tomorrow we will see that big Aggie smile again.
Aggie looooooves her daddy! And her mommy, and her "little Eldie Eldie - he's a cutie baby cuties baby cute!" She reeeeeally liked her "pre-medicine" this morning!
Tuesday, July 14, 2009
How do you spend the last night of normal before brain surgery?
We took Aggie on a walk to the lake this afternoon. We let her run around a bit, and I gave her a good (last?) wrestling match. We had a feast later in the hotel room: fried chicken and chocolate milk and a good amount of candy. We were blessed with company too- Mary Anne, Annette, Grammy and Bump and Lorraine came late this evening. They got to squeeze in a few last tickles and snuggles and hugs and even brought Aggie some cotton candy from the fair!
Here is Aggie getting the "sticky things" on her head- they are guides for the surgeon and the MRI people. She is getting her MRI done now.
She got to watch Tom and Jerry during this part so she was happy as can be! Tonight we just plan to spoil her a little :)
She sure is a trooper!
Monday, July 13, 2009
(Ok honey that's not what I needed to hear right before we go to hear the details of your surgery! I'm having a hard enough time keeping the tears back!)
"There's an owie in Aggie's head that causes her seizures, and the doctors are going to fix it."
That's what we are telling her and the other kids... and really I would probably be just fine knowing only those details too! But we got the meat of it from the surgeon today, and it was actually less stressful then I thought it would be. (Maybe because I've been having ugly visions of brain surgery since last October? ) They are going in right above her ear on the right side. They think they can get the entire tumor without causing damage... and the seem optimistic that this will stop her seizures, though it is not a guarantee. Recovery will take at least a week, one night in the ICU, followed by an MRI, followed by recovery in another area of the hospital, then home with some activity restrictions for several weeks -no swimming! :( and minimal rough-housing- anyone who knows how crazy our house is knows what kind of a challenge that will be!
We left at 6am to get to Cleveland this morning. Here is Aggie sleeping in the van (she actually slept until 830!)
She finds rest and comfort in the little things: her pillow, her blanket, her buddies... I am finding some rest and comfort in this Word from God:
We met with the neurosurgeon today- we are reassured and hopeful, and if all goes well the surgery will be Wednesday or Thursday this week. She has to have another MRI the day before so that they can do some mapping, so that is scheduled for tomorrow afternoon- tentatively, assuming things fall into place for surgery wednesday. (if not, thursday, if not thursday, next week.) It sounds like other than the normal risks of brain surgery, the biggest concern this doctor has is her peripheral vision in her left eye- she may lose a small bit of it in the lower corner, but probably won't even notice it.
So we're moving forward, hoping for a call from the Ronald Mac Donald house (there's a waiting list), and in the meantime- we are going to go for a swim! More later!
Sunday, July 12, 2009
We are in Hastings now, heading back to Cleveland tomorrow (Monday) morning for our appt with the neurosurgeon at noon. THEN we will finally know the date of surgery. We are hoping and praying it is SOON- this in between time is pretty stressful and exhausting. It is amazing how much energy it takes just to hold my insides together...
So tomorrow at 6am we hop back in the van to head to Cleveland- where there is not only hope for our Aggie, but also high speed internet! I will post again as soon as I know anything! Please keep praying - that all the details will fall into place- that surgery can be soon- that God upholds us as we wait!
God has been faithful to us and will continue to be faithful.
Friday, July 10, 2009
After we got her cleaned up, they had to put more lotion on her EEG leads and reapply some of them. To Aggie- pure torture. She screamed and screamed again, though they say it shouldn't hurt, we are not sure if she is just afraid or if she is extra sensitive (due to the seizures). They apply the lotion or whatever it is with a huge syringe that goes in the leads (not in her at all) so it looks like they are coming at her with a giant needle and stabbing her repeatedly in the head.
THEN they had to prep her for the PET scan- and this time the IV needed to be in place before she was sedated. To Aggie- more torture. And not just a little- they could not get it. Two attempts by one nurse, a blown vein, two more attempts by another nurse... still they could not get it. They ended up just taking her down without it in, hoping someone down there can get the job done. Because Eldon is so unpredictable, Josh is the one staying with her for the test... which of course gives me some time for a pity party and maybe a nap. It is nice to have a baby to snuggle!
This is what it looks like without the wrap (they only put the wrap on so that kids will not try to mess with the wires.) She was pretty whipped by this point, but still trying to be brave!
Things are going to get better here pretty soon... Aggie is probably happily passed out by now, and after she wakes up they will unhook her and let us go! (hopefully before it is dark tonight!) We are staying in the hotel tonight, depending on how she's doing we may go out to eat or let her buy a toy or something special. It is going to get better.... It may get worse before it gets better, but it is going to get better!
Thursday, July 9, 2009
Here's Aggie doing crafts- her bumble bee is hanging on the wall by the TV so she can see it!
Aggie was supposed to have her PET scan today, but there was some confusion with the scheduling so she will have it tomorrow. She had her neuro-psych consult today so that can establish some sort of baseline to compare with however she is six months post surgery. They interviewed tired and pathetic Aggie (not to mention Aggie low on sleep and high on seizures) but that's the one we had to work with at the moment!
When we see her have a seizure we push a button- this marks the video and also signals all the nurses to come in case there is a problem.
Do you see the darker areas on the screen above, where the lines go up and down really fast and make a big black spot? Apparently that is her brain getting excited- at that moment she was in the middle of an argument with her daddy "NOOOO daddy- I AM PETER PAN! You are the crocodile!"
Aggie chatting with me yesterday. She does like having at least one of her little playmates here with her!
Today we are just waiting... waiting for the doctors to tell us what is next. She will still have to have a PET scan and a neuro-psych consult at some point, then surgery sometime next week. We are waiting to see when those things will be and will make plans from there. We are having no problems getting seizures on record, including the nasty ones. The one she had this morning was so nasty they gave her oxygen. They were about to give the rescue medicine when she came out of it.
I asked her doctor if there is anything else we need to do for her before surgery to keep her safe (nighttime monitors, etc), and she said "No- just enjoy her. You can't fix her, but we will."
I sure do like how that sounds.
Lorraine, Seth, and Marcus are staying with Grammy and Bump for now. As busy as we are at the hospital with Aggie and Eldon, we sure miss our other three!
Julie brought snacks and even Christmas presents for the kids!