January 30th, 2007. Sometimes it seems like just yesterday and sometimes it seems like a lifetime ago. I guess it's a little bit of both.
January 30, 2007. Hannah's date of diagnosis, 2 years ago today. I went back and looked at what I wrote last year on this date, after only 1 year. It was like being there again, living it again. I remember:
9:00am-MRI
1:30pm-Dr. Mercier calls "they found something, go get her now, are you OK?"
4:00pm-Dr. Egnor shows us Hannah's tumor on the computer screen, and all that white stuff on top of the brain-hydrocephalus, not good. Hannah sat there innocently on the exam table, long hair, big brown eyes, Dave and I were looking at the computer screen and hearing the words "tumor" from the neurosurgeon. "She needs surgery, and she needs it right away," is what we were told. "It's probably cancer," is what we were told. I was crying, Dave had his stressed out look on his face, and Hannah was quiet. When Dave asked Dr. Egnor to step out into the hall I remember being so mad that he would discuss this without me, but I came to realize he wanted to talk without Hannah hearing.
Later-I don't know what time we got home but Diane and Tom Graeb brought Colby back to our house, and we stood downstairs and talked and cried with them. Colby and Hannah still didn't know because we really didn't know. Mary called and offered her support, a cancer survivor, that helped a lot. After researching that night we decided to put our trust into Dr. Egnor, a doctor we had just met and only spent about 1/2 hour with. He was going to cut into our daughter's brain and save her life.
January 31, 2007. We check into the ER at Stony Brook hospital. Hannah is put on IV steroids to try and reduce the amount of fluid on her brain. For two days we sit in the Pediatric ICU at Stony Brook with Hannah crying and very upset about the IV in her arm. We wait.
February 2, 2007. Hannah has brain surgery. 6 long hours of waiting and then Dr. Egnor comes out to tell us (in the waiting room full of people) that the surgery went great, and it was most likely desmoplastic medulloblastoma, but we would have to wait a few days for the pathology to confirm. IT WAS CANCER. He was almost correct, it turned out that is was standard risk medulloblastoma, and he took out 100%.
I could go on and on, but the rest as they say, is history and it's all documented here. Sometimes my memory fails, but I can remember almost every detail of the last 2 years. Cancer just sucks, is there any other way to say it? And pediatric cancer, it just seems to add another bad dimension to cancer, striking down the young and innocent. But...
I have learned and grown more in the past two years than I ever thought possible. Our family has bonded, our family has changed and our family has grown more than I ever thought possible. Along with all the evils that cancer has brought into our lives, it has brought just as many positives. It has brought
love
new friends
compassion and caring
giving
understanding
a new perspective
a new appreciation
a new focus
love
Another cancer mother said to me once "in the deck of cancer cards, we drew the lucky card." Our treatment was successful, our complications are minimal (well sometimes) and most importantly, Hannah is still alive. Are we lucky? I don't know, sometimes yes and sometimes no. I know that Hannah is still alive. Are things perfect, are things like they were before? NO, they are not. But, whose life is perfect? No-one I know!
My hope for our future is that continue to try and make a difference in the lives of other children afflicted with cancer. Our perspective on life, and pretty much everything, has changed. I think it's changed for the better. We know now that we live every day like we may not be here tomorrow. Do we always accomplish that? No, but we are more cognizant. We will continue our fight, and the fight against pediatric cancer. One day at a time.
We're here.
♥
Friday, January 30, 2009
Monday, January 26 2009
Since my last post, Hannah visited the neuro-ophthalmologist with good results. He did a rather brief exam and reviewed her past reports from when she was in Boston (2 years ago), and our most recent visit to the ophthalmologist. Hannah was unable to complete the test he wanted her to do. She placed her chin and forehead on the rests and was supposed to press the button when she saw the flash. It was almost like a big bowl facing her, with a small pinpoint in the middle. But, the assistant couldn't adjust the machine correctly and kept telling Hannah to keep her head still. However, the machine was set way too high and Hannah was sitting up as tall as she could, so she couldn't keep her head forward enough. She finally started crying, you could see it coming. They brought in someone else to adjust the machine who immediately made the necessary adjustments and all was good. However, Hannah couldn't keep her head still enough and again, the assistant was moving her head and telling her what NOT to do. Again, Hannah started crying. I said That's it..she's done, we're done with this test.
So, the doctor said there is nothing wrong with her. He didn't agree that she had abberant regeneration of the nerves. He was a bit old and grouchy and not really the kind of doctor who felt he needed to explain himself other than to say "there's nothing wrong with her, it is the way it is." I guess I should take that and be happy with it, but then what is the explanation for the eye issues? We were told for 2 years that Hannah was constipated, that Hannah had migraines, that Hannah was crazy. And guess what, they were all wrong. Hannah had a brain tumor. For 2 years we went from doctor to doctor, and all the while, Hannah was suffering with a brain tumor. We are feeling a bit frustrated now, like we are in another vicious cycle with all of this. Right now, Hannah is dealing with cognitive issues, emotional and aggression issues, stomach problems, nausea problems, eye problems, balance issues, constipation problems, foot drop and leg pains at night.
Ok, I'm done complaining now. Hannah is here, she is tumor free, she is here. Sometimes it's just touch dealing with all of these issues every single day. But will we take that over cancer...any day.
We have a new plan in place to solve her stomach issues which continue to plague her on a daily basis. She is missing quite a bit of school again because of it. Last week she only went to school 1 1/2 days total. We are trying a new combination of medicines to help with both the chemo induced constipation and the stomach pains (which do not seem to be a result of the constipation and may be the result of acid reflux.) That's the plan for now, so we'll try this out and see how it works for her for the next month. Her oncologist said we will work with this right now and "see what the MRI shows." I almost fainted when I heard that, as if it could possibly show something. It's scheduled for February 10th.
♥
Thursday, January 22 2009
It's been a pretty busy week for us. I don't think I mentioned that Hannah went to an ophthalmologist last week. AFter a very thorough exam, he did not find any issues of alarm that would necessitate a rush MRI. Whew, one hurdle down. He did notice that when Hannah looks up, one of her eyes tracks outward, instead of looking directly up. Most likely, her muscles are fighting to direct her eye back to it's normal position. His best explanation was that she may have something called aberrant regeneration. To simplify a bit, Hannah's brain had to regenerate many of it's existing neurological pathways after the surgery and radiation. It is still in the process of that regeneration, however, some of those pathways may not be properly reforming. If this is the case though, there is nothing that can be done. Even after the regeneration is complete, the pathways will remain as they are formed. The eye issue isn't that big of a deal, as long as we know that is what it is, and it isn't tumor related. She has an appointment tomorrow with a neuro ophthalmologist to confirm there are no issues.
But, last night she had another episode that could be neurological related. After she went to bed, she called out screaming and crying that her legs hurt. She said she felt like she had to stretch them. She was straining and straightening her legs and squeezing her hands into fists. I walked her, and talked to her, made her walk and stretched her legs out, tried breathing and visualization with me. I finally gave her Tylenol and rocked her in the rocking chair. She finally calmed down after about 30 minutes. this was so reminiscent of how she was shortly after surgery. I don't think we had the blog then, but shortly after surgery, Hannah had a problem with her legs. We had to constantly move her legs or massage them. We spent hours and hours either bending her legs in and out, or riding her down the hallway on the bike we strapped her feet and body to, just so that she could keep her legs moving. We tried ice, heat, many different kinds of drugs, none that worked. She still had the problem when we went to Boston to start radiation. They finally put her on a drug that was an anti-anxiety medicine, and that slowly subsided the problem over time. I'm hoping this issue is not neurological related, and that it may be just growing pains. She had it again tonight, but not as bad.
The stomach problems continue for Hannah too. Yesterday, she came home from school at noon with a stomach ache. She looked awful. She didn't go to sleep as usual, just relaxed and even did some homework later in the day. Then, with the leg issues, she didn't get to bed until after 10pm. This morning, as I was trying to get her dressed, she started crying that her stomach really hurt and she felt like she was going to throw up. She slept in until 10am, and didn't eat much all day until this evening. I feel like she is missing more school now then while she was on treatment. I have spoken with several doctors today, and we have a new plan for now, which we'll start tomorrow. And, her next MRI is set for February 10th. Dave and I said today that we feel the frustration like we felt before she was diagnosed. We knew something was wrong, but no one could pinpoint it. We working on it....
♥
Sunday, January 18, 2009
Today Dave and I attended Jacob's memorial service in NYC. Our friend Amy, Alec's mom, made the trip in with us and it was nice to have her along. The day seems somewhat of a blur to me, so I can't imagine how Nancy and Michael and the rest of Jacob's family feel right now.
Their family is Jewish, and we had never been to a Jewish service so we didn't know exactly what to expect. The service was at the JCC in the city. There were so many people that we all couldn't fit in their auditorium. Nancy spoke first, how she made that speech I don't know. She was calm and composed in true "Nancy" fashion.
I will never forget the first time I saw Nancy, her husband Michael and her parents. They were in the cafeteria next to the hospital in Boston where both Hannah and Jacob had radiation. Dave and I were there with Hannah trying to coax her into eating, and as we walked out they called us over. We knew that they must be the new family in town for radiation. It was Jacob's first day. I'll never forget how "together" they looked. I knew how they were feeling on the inside, but on the outside, they looked like they were enjoying a normal family lunch.
Hannah was in her wheelchair that day, the big clunky version with the headrest. Nancy spoke directly to her, which so many adults were afraid to do. Nancy spoke to Hannah first, the most important person there for that moment. I still remember that. Today Nancy spoke directly to Jacob and about Jacob. Nancy spoke not only to us, but to Ben, Jacob's little brother who is only 8 years old. Ben and Jacob were brothers and best friends. Each family member spoke about their fondest memories of Jacob. About their weekend bake sales in the city, about Jacob's interests, his strengths and his courage. I think the strong and courageous ones there today were his family. The rest of us were there to show our support and our love for them but in reality they supported us. We are grieving with them.
It just breaks your heart, so many children out there without their brother or their sister because they died of cancer. As Peggy says, we can't pretend to know God's will in all of this tragedy, we just have to offer ourselves up to his plan. As Jacob's father Michael said, when your parent dies, you are an orphan. When your spouse dies, you are a widow. But, there is no word for you when your child dies except heartbroken. Tonight, our hearts are broken too.
♥
Saturday, January 17, 2009
A few new things to report, but more pressing news right now. Sad news. With heavy heart, we tell you that our friend and fellow cancer warrior Jacob has lost his battle with medulloblastoma.
We met Jacob and his family when Hannah was at Spaulding Rehabilitation Hospital in Boston while having her radiation treatments. We had heard that another family was arriving, a boy 9 years old from Manhattan, a fellow Yankee fan. Yankee fans were pretty sparse in the heart of Red Sox territory, so it was good to have an ally.
I remember thinking that we could possibly help their family feel comfortable and find their way since we had arrived first. I think I even wrote about it on the blog. Boy was I wrong, but in a good way. Jacob arrived and hit the ground running. His family was very in tune with what was going on, they didn't need support, they seemed to have it all together! His mom, Nancy, quickly became a friend. She showed me the ropes of all the online parents groups and research avenues. I learned right away that Nancy her stuff together.
Jacob was a bit more critical than Hannah when he arrived at Spaulding. He had already started chemotherapy, and was in the throes of posterior fossa syndrome, which Hannah had experienced also. Besides dealing with radiation like Hannah, Jacob had to deal with radiation and chemotherapy at the same time. Jacob's cancer was identified after it had already metastasized to his spine so he required more aggressive treatment. He was considered high risk, in contrast to Hannah's standard risk diagnosis. Regardless, Jacob had such an endearing personality. For those who got to know him, he had such a wit! His sense of humor was pretty dry, and totally in tack, even in his situation. He was a bit older than Hannah, he was a boy, he wore an eye patch and he didn't talk much. At this point Hannah was shying away from everyone, but she could relate to Jacob, the "Yankee friend next door" and his little brother "Ben." Jacob and his family introduced Hannah and I to our first Chinese noodles and shrimp when our families dined together one night. Jacob and Hannah didn't talk much, but they did eat, and that was always a good thing in those days. Hannah still likes Chinese shrimp and broccoli.
Jacob's mom Nancy has worked endlessly to manage his care and help him beat his cancer. I have learned so much from her. She is so smart, resourceful, tireless, inventive and such a good mom to Jacob. Nancy could research better than anyone I have ever seen. If there was a treatment to be found, Nancy would have found one. She has spoken with doctors in Serbia, India, Germany and all over the United States. She pushed Jacob's doctors to work outside the box and find new ways to help Jacob. I believe that she helped extend his life, and his quality of life more than he would have had otherwise. And you should hear what she has planned for the future. She is someone who acts quickly and decisively, and I know that any future project she sets her mind to, she will be successful.
If you have a moment, please take it and visit their website to offer than a word of condolence. Another brave warrior that fought hard and lost his battle. We will be celebrating his life tomorrow in NYC with his family. Our friends...
Jacob's website
♥
Monday, January 12, 2009
Thank you Colby for the update on the lacrosse game in the messages here. Colby forgot to mention that she spent most of the game on the bench sick! This weekend she has another opportunity, they have a double header.
Another Coleman video to share, it's a video that Peggy prepared for Coleman's celebration of life on Saturday. I was thinking of them all morning, so wish I could have been there with them.
♥
Sunday, January 10, 2009
Seems like the weekend flew by, even though it hasn't been an easy one. We thought a lot about Coleman and his family this weekend. We also have another very close friend who is losing his battle with medulloblastoma, it's heartbreaking.
We had our own scare this weekend, spending Saturday afternoon in the ER at Stony Brook. On our way to Colby's first lacrosse game this weekend, Hannah out of the blue said that she was having trouble looking up. She said it didn't hurt, but she felt like when she looked up her eyes were being pushed down by pressure. I just looked at Dave as he looked over at me in the car as I said I was calling the doctor. One of the key symptoms of hydrocephalus (fluid on the brain) is known as Sundowners Syndrome-where you can't look up. Hannah could move her eyes up, but said it was uncomfortable. She didn't have any other symptoms-headache, blurry vision, unsteady gait.
I called the on call doctor in oncology at Schneider's and also her neurosurgeon's on call doctor (at Stony Brook, where Hannah had her brain surgery.) I got the neurosurgeon first, who said though it didn't sound immediate, they wanted us to come in for a CAT scan to check. Schneider's said the same thing. Also, it was just beginning to snow and we didn't want to be stuck in a storm if anything got worse. We dropped off Colby and Dave at lacrosse and continued on to the ER. I called my friend Amy, Alec's mom, who said that the last time Alec had hydrocephalus, he could raise his eyes also, but he had a headache. She did give us a good tip though-tell the ER that Hannah is immunosuppressed so we could speed through the ER. Many thanks to Amy-that worked like a charm. They gave us a mask and put us into a room right away.
All was speeding along, until we came to the first roadblock-the dreaded IV. I had told Hannah that she didn't have to have any pokes, no needles. Well, I shouldn't have promised that, they wanted to draw blood to rule out any type of infection, including meningitis. Not only did they have to draw blood, but they had to leave the IV in, which really made Hannah mad. She said NO, she wasn't letting them put it in. I had to make quite a deal with her to get by this roadblock-it was dinner and 2 stores of her choice at the mall. She let them put it in, but the nurse wasn't an expert, it hurt just to look at it. They drew blood, then took us down to CT fairly quickly. A CAT scan takes all of about 45 seconds, and we went back up into the room. By this time Dave showed up to wait with us.
Second roadblock-they wouldn't take the IV out until they had confirmed no infections, and a clear CAT scan. After about an hour they did come in to tell us no infection and the scan was clear. But, neurosurgery had to also view the scans and they had an emergency. They didn't want to remove the IV until after neurosurgery had cleared the scan, just in case. After about another hour and a half with Hannah rolling around and crying that SHE WANTED THAT IV OUT and WHY WASN'T I GETTING ANYONE TO PULL IT? I finally went out and told them to come in and take it out. They reminded me that there was a possibility that it would have to go back in if anything was found. I told them if we had to put it back in due to a problem, that would be the least of my worries. They came in right away and about 10 minutes later, neurosurgery arrived. They had taken the time to review her scans against her old scans they had on file. They said there was absolutely no problem with this CT, it looked much better as far as size of the ventricles, and no fluid at all.
So after much angst and quite a bit of time spent in the hospital we were thankful that all is ok. I don't even think we were emotionally prepared for a possible bad outcome. The two biggest possibilities were blockage of the ventriculostomy, the hole drilled in the 3rd ventricle to allow the fluid to properly drain from the brain, since Hannah's brain was not properly absorbing it's own fluid after her initial surgery. The doctor wanted to try this procedure so that Hannah didn't have to have a mechanical shunt put in. However, there is a chance that the ventriculostomy will stop working and have to be redone at some time. We hope this never happens of course. But, even worse than that, was the possibility of tumor regrowth, which could have been causing the hydrocephalus. Obviously very bad too.
Thank goodness that neither occurred and even though we don't have an explanation for it, we know it's not something threatening. We are counting our blessings. Today, she says her eyes are back to normal. I wish I could report that her stomach is back to normal, but lots of problems with that too. Poor thing!
♥
Wednesday, January 8, 2009
Hannah went to clinic yesterday for her regular checkup. All of her counts now, except her white cell count are within normal levels, which is good to see. Hannah has been doing better since we started her on the exlax, but we are still trying to get the dosage right, sometimes the medicine itself gives her stomach pain, which is usually relieved after she makes a trip to the bathroom.
This morning she woke up and didn't feel very well. She ate only 2 crackers on the way to school. I got a call at 11:30 this morning from the nurse, she had not eaten snack and now was not eating lunch. Hannah told me that whenever she put food in her mouth, she felt like she was going to throw up. She came home and then slept until 4:30 this afternoon. Usually after that long, she feels better, eats a bunch and all is well. Not today, she just kept saying she didn't feel very well. She finally had a popsicle, then a small bit of popcorn at 9pm. She said she felt a little better, but still had a stomach ache. There is a bad stomach sickness going around at the school and many people have it. I'm wondering if this is a touch of that. We'll see how she is doing tomorrow. Here she is with her popsicle and her guard dog.I had a lot of hopes for this exlax to finally give her some relief from these stomach aches that she has had for over a year now. I hope she is still on that path of recovery and that this is just a bump in the road for her.
Many have been asking about Coleman, so I thought I would cut and paste his mom Peggy's words last posted on Coleman's site. She is one special person. Be sure and watch the video at the end, I just can't believe he's gone.
♥
Coleman was an amazing child of God and we were so honored to be chosen as his parents.
He left this world at 10:45 last night- he fought HARD until the very end, not wanting to give up, but finally letting go. He was a warrior and a hero our hearts will forever miss. We had the most glorious five years together- a gift we will never forget.
A quick story. :)
One day Coleman heard someone say they were mad at God. He didn’t say a word, but later came to me with this complete look of disbelief on his face and asked, “mommy? did you hear them say they were mad at DOD? WHY would they say that?” He couldn’t even fathom the thought. Then he raised his little eyebrows and said, “well, I hope they don’t say that in PUB-WIC (public)!” and walked away. He knew there were some things he could not change, but HIS faith never wavered.
Lots of people have mentioned their anger toward God …how can He let this happen when so many people have been praying for Coleman? Why didn’t he answer our prayers?
I just can’t be angry at Our God who sent Coleman to us in the first place. Coleman was a child of God, WE were chosen to be his parents- and how blessed we were. Maybe my feelings will change, but like Coleman, I can’t imagine being angry at God. Would we have loved to have had more time with Coleman? YES! I want him back right now, but I know that’s the selfish part of me talking. I know I will hurt more than I can ever imagine in missing him…and I know I will have MANY days of heartache and anger, but my anger is over the fact we live in a world where we can do so much, but still do not have a cure for this horrific disease. Children are paying the price for that. More on that will come-
I guess what I’m saying is I know for a fact, Coleman would NOT want us to be mad at God. He taught us so much in his time here. His lessons will go on for a very long time. He knew where he came from and he knew where he was going. My heart aches for more time, but I’m SO thankful for the time we got with him, and we know we WILL be with him again. God doesn’t always answer our prayers in the way we want him to…HIS ways are not ours, and that’s hard to accept, but true. It doesn’t mean I don’t question it- it’s hard to understand, but one day we WILL know.
Many people have asked how Caden is doing. Now that’s a long story, but we have assured him that we love him. He is dealing the best way he can- just like us.
I turned my desk Praying Parent calendar today, and thought I’d share what it said…
“We are dependent on God to enable us to raise our child properly, and He will see to it that our child’s life is blessed. One thing I have learned is that I should not try to force my own will on my child in prayer. I have found it is better to pray more along the lines of “Lord show me how to pray for this child. Help me to raise him Your way, and may Your will be done in his life.”
I believe God’s will was done through Coleman. I know it.
For those inquiring:
We will celebrate Coleman’s life on Saturday, Jan. 10th at 10:30 a.m. at Our Saviour’s Lutheran Church in Callender. Visitation will also be at the church on Friday the 9th after 4:00p.m.
Instead of flowers, we’d love donations made to
The Hospice House of Fort Dodge, Iowa
The Ronald McDonald House of Iowa City
or curesearch.org
We’d like to thank EVERYONE who has helped our family along this journey the past two and a half years. We will never be able to explain how much we appreciate the support for our Team. Our carepage family is the BEST!
To the hospice house- you will always have a special place in our hearts. You made the most difficult time of our lives one filled with love. Nadine and your staff, God bless you. I know Coleman would like us to thank you as well for making his last days as comfortable as possible for him- and for us all.
God bless you baby. Coleman said long ago, "some day I won't need NO more meds or pokes, wight mommy?” No more sweetie. You are free.
One more story to share…thanks again Nadine.
The Parable of the Twins-
Once upon a time, twin boys were conceived in the same womb. Weeks passed and the twins developed. As their awareness grew, they laughed for joy, “isn’t it great that we were conceived? Isn’t it great to be alive?”
Together the twins explored their world. When they found their mother’s cord that gave them life, they sang for joy, “how great is our Mother’s love, that she shares her own life with us!”
As weeks stretched into months, the twins noticed how much each was changing. “what does it mean?” asked the one. “It means that our stay in this world is drawing to an end, said the other. “But I don’t want to go”, said the other, “but maybe there is life after birth.” But how can there be?” responded the other one. “We will shed our life cord, and how is life possible without it? Besides, we have seen evidence that others were here before us and none of them have returned to tell us that there is life after birth. No, this is the end.”
And so the one fell into deep despair, saying, “If conception ends in birth, what is the purpose of life in the womb? It is meaningless! Maybe there is no mother after all?” “But there has to be,” protested the other. “How else did we get here? How do we remain alive?”
How you ever seen our mother?” said one. “Maybe she lives only in our minds. Maybe we made her up because the idea made us feel good?”
And so the last days in the womb were filled with deep questioning and fear. Finally, the moment of birth arrived. When the twins had passed from their world, they opened their eyes and cried for joy. For what they saw exceeded their fondest dreams.
Author Unknown
OH OH OH I have to say too-
Dr. Woods from Des Moines and Dr. Gilheeney from NY who called us personally- GOD BLESS YOU! Our world needs more doctors like you. It means so much to us. We will never forget your compassion. Thank you.
Blessings to you all,
Nev-va Div up-
Team Larson
UTUBE is going to pull this video because of the song used, so I thought I'd try to post it and see if it's still viewable...Cman and his bunny foo-foo. That bunny helped him through many hard times, and he still twirled the ribbon even on the high doses of morphine. This is Cman's second bunny after he lost his beloved first. A story of LOVE...
Tuesday, January 6, 2009
It is with a heavy heart that I post that our friend Coleman Larson has died. He passed away last night, just barely 5 years old, at 10:45pm. No more meds or pokes as his mom says, he is free...
Visit Coleman
♥
Sunday, January 4, 2009
We made it home from Indiana, it's cold here too! We really had a good time, it was nice being away, none of the stress of where to be, or what to clean or wash or put away. I did get a BIG surprise when we got home, Dave had taken down the tree, including putting away all the ornaments (there are A LOT) and put away almost all of the decorations (did I mention there are A LOT). Wow, it was great! Tomorrow it's back to the grind, school and work starts.
♥
