Friends and family,
I believe in the power of numbers, and want you all to know that Allison is eating so well that she gained 3.5 pounds in a week. She is now 44 pounds, or 20 kilos, a strong number, and is only four pounds from her pre-surgery weight. With trips to Dairy Queen, Arby's and McDonalds for shakes and banana splits, hopefully we will see her pass 48 pounds and actually get into the 50s in the next few days. She is finally gaining some ground on the nausea and sickness that permeated the first two weeks of radiation. Now that the radiation field is smaller, she is feeling much better. Her speech is returning, along with her energy, ability to walk, and desire to play and be a kid again.
I am starting work tomorrow while she is on an upswing, something that will really help the transition. Sara, our nanny, starts working with us on Monday. Brian will begin to cover the radiation and chemo appointments, and our family will help us get to additional therapy and other needs. We are moving forward now, instead of backwards. We have decided to let everyone know that Allison does not have cancer anymore, now that the tumor has been removed and all of the tests for more cancer cells have come back negative. Now we are safeguarding against getting any more cancer cells, but she is cancer free at the present. I think it helps her to cope with the issue and not feel so weak or fragile.
Emily and Allison are learning how to be together again. With all of Emily's strengths, she is still having a hard time adjusting to the changes in her big sissie, who used to rule the roost but they still got along so well. Their incredible relationship before surgery meant that each had a playmate from dawn to dusk with very few disagreements. Now Allison is grumpy sometimes and Emily is not used to it and she has had a hard time getting used to the physical changes in her sister. It looks like along with other adjustments, their relationship will have to take time. But Allison is re-emerging. Certain gestures, sayings, and other Allison ticks are starting to resurface, and her memory is sharper than ever.
Everyone asks how I am, or how Brian is. We are fine. We are coping and talking and still marvel at the support of all of you. We see so much joy every day and we do laugh a lot, about things little and big. I think I said this before but I feel like our lives have become exaggerated versions of our life before surgery--both the highs and lows are so much larger and pumped up in volume.
Thanks for keeping in touch. We are planning an event to raise money for pediatric neuro-oncology research and involving the shaving of as many heads as we can muster in the little park in front of our house. Keep posted for more details very soon.
All of my love,
Dianna
Thursday, May 31, 2007
Saturday, May 19, 2007
Emily Ruby Winn = Energy = MC Squared
Our Constant is Emily Ruby Winn.Otherwise known as Bubbles.
Many moments over the last 6 weeks have been made endlessly easier by the greatest little sister in the world. She is total Teflon, total positive energy, and extraordinarily magnificent. She has made Allison and her parents light up with her simple, undeniable, presence.
She turned FIVE today yet she has granted her parents five hundred years of joy in these short years. To think she was conceived with an IUD in place, something that happens to less than one percent of all IUD users.
Thank G-d she is here. She keeps us going, because she distracts us and reminds us of all that is normal and happy in the world of a five year old. In the hospital silly stories about Emily were our staple for getting through boring afternoons and just before bedtime. Everyone wants to know how she is doing. We think pretty well. She is happy now that we are home together, and even though things are not the way they used to be, she knows they will be some day. Our neighbors keep her busy with scooter races in the alley, playdates, movies, and general kid stuff. She has more friends than she knows, who will do anything to spend a little time with her just to hang out. When I ask her if she is sad, she shrugs, and says no, she is happy, everything is ok. Maybe this is the right age to have to deal with this kind of family trauma, when she can still experience so much joy without worrying too much about the future.
She wore a princess tutu tonight, lounged on her blow-up Barbie chair (with matching ottoman), played with her Bitty Baby (named Cora) and her Groovy Girl horse and knew that all was right with the world. When we get the pictures developed, we will share them with all of you so you can see the light in her eyes.
Love,
Brian and Dianna
Friday, May 18, 2007
Two down, four more to go
Two weeks of radiation are now over. Today was the last day Allison spent on the treatment table face down while radiation took place along her spine and she got to bring home the mask fitted to her head because it will no longer be needed. She'll use a new mask starting on Monday for the rest of her treatments during the next four weeks.
I told Allison she had passed a milestone today in finishing this first phase of radiation. When I asked her if she knew what a milestone was, she said she didn't, so I said it was kind of like kindergarten graduation, or the end of a phase that she had completed. Horrible comparison, no wonder she wasn't excited about it. They did a little ceremony at the radiation clinic to mark the completion, with balloons and bubbles. Yesterday when Allison had a hard time getting on the table, and started crying because she didn't want to do it, the radiation therapist, Joe, leaned down and spoke so kindly to her. He said that even he, an old man, felt crying sometimes, and it is ok to cry because it makes you feel better. A little Rosie Greer in the background would have made it a TV perfect moment. But still he helped at just the right time, when both Allison and I were at our wit's ends. It seems like we rely on so many people, family, neighbors, friends, for these small pick me ups. They really help keep us going when we have no idea what to do next.
Her moods are black, part of the lingering posterior fossa syndrome. She has started eating a bit more thanks to steroids, so hopefully she will regain some of what she has lost during the last week when she had no appetite. I'm hopeful that we won't have the same problems we did last Saturday with tremendous nausea so we can move forward a few steps instead of backward.
In the meantime Brian and I are getting busier and I am getting ready to return to work on June 1. Brian has started seeing patients again, and it has been good for him to get back to work. We do all of our rehab appointments at Presbyterian St. Luke's Hospital so we are near him and stop in and see his partners and staff.
I passed my thesis defense a couple of weeks ago and have to turn in my thesis to complete all of my requirements for a master's degree in history at CU Denver. That milestone is almost gone, too.
Getting back to our old lives helps Brian and I a great deal. Juggling work, family, and cancer is going to be a huge challenge. Thanks to everyone who is helping us with meals and house cleaning. These two things are helping keep us afloat, both with sustenance and a clean and peaceful oasis to rest in. Thanks so much!
Love,
Dianna
I told Allison she had passed a milestone today in finishing this first phase of radiation. When I asked her if she knew what a milestone was, she said she didn't, so I said it was kind of like kindergarten graduation, or the end of a phase that she had completed. Horrible comparison, no wonder she wasn't excited about it. They did a little ceremony at the radiation clinic to mark the completion, with balloons and bubbles. Yesterday when Allison had a hard time getting on the table, and started crying because she didn't want to do it, the radiation therapist, Joe, leaned down and spoke so kindly to her. He said that even he, an old man, felt crying sometimes, and it is ok to cry because it makes you feel better. A little Rosie Greer in the background would have made it a TV perfect moment. But still he helped at just the right time, when both Allison and I were at our wit's ends. It seems like we rely on so many people, family, neighbors, friends, for these small pick me ups. They really help keep us going when we have no idea what to do next.
Her moods are black, part of the lingering posterior fossa syndrome. She has started eating a bit more thanks to steroids, so hopefully she will regain some of what she has lost during the last week when she had no appetite. I'm hopeful that we won't have the same problems we did last Saturday with tremendous nausea so we can move forward a few steps instead of backward.
In the meantime Brian and I are getting busier and I am getting ready to return to work on June 1. Brian has started seeing patients again, and it has been good for him to get back to work. We do all of our rehab appointments at Presbyterian St. Luke's Hospital so we are near him and stop in and see his partners and staff.
I passed my thesis defense a couple of weeks ago and have to turn in my thesis to complete all of my requirements for a master's degree in history at CU Denver. That milestone is almost gone, too.
Getting back to our old lives helps Brian and I a great deal. Juggling work, family, and cancer is going to be a huge challenge. Thanks to everyone who is helping us with meals and house cleaning. These two things are helping keep us afloat, both with sustenance and a clean and peaceful oasis to rest in. Thanks so much!
Love,
Dianna
Saturday, May 12, 2007
Down
Everyone,
We are having a hard go of it today, and will probably have a hard day tomorrow. The radiation made Allison nauseus earlier in the week and we thought we had it licked with more medicine, but this morning proved that wrong. She is not feeling well at all, and it is all we can do to keep a bit of liquid in her. It makes me realize just how hard the next few months are going to be. When I think about how I am going to handle all of the side effects from both chemo and radiation, I start to get worried. But it's like we've known for awhile, it will have to be one small step at a time. That's all we can think of now because if I get too far ahead of tomorrow my head starts to spin, or I see red, and either feeling is not one that is very helpful right now.
Thanks for staying posted to the blog even though we aren't posting as much. We simply do not have as much time, energy, or things to say beyond the fact that we are doing this day by day and praying for recovery. Rehab started this week and she is getting stronger, as long as her tummy cooperates.
Your birthday greetings and wishes for Allison were really sweet. We had a lovely small party at home. All I can say about Casa Bonita is that we went, and hope to return some time when we can all really enjoy it. It was hard. Birthdays are going to be hard for awhile, as is Mother's Day and other holidays and milestones.
Thanks for helping at a distance. We are still overwhelmed by your generosity, notes, food, and gifts that are left at our front door but not at all ready to re-enter the world just yet. We are just trying to get through these hard days, but soon we'll be back out and about.
Take Care everyone,
Dianna
We are having a hard go of it today, and will probably have a hard day tomorrow. The radiation made Allison nauseus earlier in the week and we thought we had it licked with more medicine, but this morning proved that wrong. She is not feeling well at all, and it is all we can do to keep a bit of liquid in her. It makes me realize just how hard the next few months are going to be. When I think about how I am going to handle all of the side effects from both chemo and radiation, I start to get worried. But it's like we've known for awhile, it will have to be one small step at a time. That's all we can think of now because if I get too far ahead of tomorrow my head starts to spin, or I see red, and either feeling is not one that is very helpful right now.
Thanks for staying posted to the blog even though we aren't posting as much. We simply do not have as much time, energy, or things to say beyond the fact that we are doing this day by day and praying for recovery. Rehab started this week and she is getting stronger, as long as her tummy cooperates.
Your birthday greetings and wishes for Allison were really sweet. We had a lovely small party at home. All I can say about Casa Bonita is that we went, and hope to return some time when we can all really enjoy it. It was hard. Birthdays are going to be hard for awhile, as is Mother's Day and other holidays and milestones.
Thanks for helping at a distance. We are still overwhelmed by your generosity, notes, food, and gifts that are left at our front door but not at all ready to re-enter the world just yet. We are just trying to get through these hard days, but soon we'll be back out and about.
Take Care everyone,
Dianna
Sunday, May 6, 2007
"Good"
Ok, you have to know: Allison is talking again! She began on Friday morning. Brian came in to her room and asked her how she slept, and she said, "Good." She kept repeating one syllable words all morning, and by noon, had begun answering questions with simple answers. By the time I checked on her in bed at 9:30 pm, she rolled over, even though I hadn't said anything and said, "I don't need to go potty." Can you tell the question we have been asking her morning, noon, and night?
I hope this brings you as much joy as it does us. When Emily heard she started jumping up and down whooping for joy I, of course, heard "mommy" for the first time and burst into tears. She read aloud last night, and even though some of the sounds are harder than others, she did a great job. Speech therapy will begin to help with the rest. She reached this milestone 28 days after the surgery. Now she can let us know with words how she is feeling, what makes her scared, or what she wants to do, even if it is "Leave me alone and shut the door!" Or, "No, you can't play with my pink Leapster!"
We are going to Casa Bonita to celebrate her birthday tomorrow night!!!! Wahoooo. She has begged to go back ever since we went after the Mexican Rodeo at the Coliseum. Here we come cliff divers, outlaws, and damsel in distress--you'd better be on your cliff on Monday night!
Love,
Dianna
I hope this brings you as much joy as it does us. When Emily heard she started jumping up and down whooping for joy I, of course, heard "mommy" for the first time and burst into tears. She read aloud last night, and even though some of the sounds are harder than others, she did a great job. Speech therapy will begin to help with the rest. She reached this milestone 28 days after the surgery. Now she can let us know with words how she is feeling, what makes her scared, or what she wants to do, even if it is "Leave me alone and shut the door!" Or, "No, you can't play with my pink Leapster!"
We are going to Casa Bonita to celebrate her birthday tomorrow night!!!! Wahoooo. She has begged to go back ever since we went after the Mexican Rodeo at the Coliseum. Here we come cliff divers, outlaws, and damsel in distress--you'd better be on your cliff on Monday night!
Love,
Dianna
Wednesday, May 2, 2007
Our New Normal
Hi everyone,
Glad you all got to see the euphoria of our homecoming, thanks to our wonderful neighbors who showed Allison just how special she really is. The fire truck and visit with the firefighters was especially cool, and one neighbor said there was not a dry eye on the block. I know I cried a river of joy that night and I will not soon forget how wonderful it felt to bring her home. She was overwhelmed with happiness. The look of contentment on her face when she lay down in her own bed was spellbinding.
She may look a little different, with stitches all over the place, and with a couple of new added items in her body (a shunt, mediport), but she is minus one yukky tumor, and she is still the same girl. Everyone wants to know how she is, and I would say she is doing the best she can now that she is back home. You might remember she was diagnosed with posterior fossa syndrome, also called cerebellar mutism, which means basically her coordination is really off and she is not talking yet. Her eyes are still not tracking together, at least not all of the time, but will slowly return to normal. No one knows why some kids get this, but everyone says she will be talking again, we just don't know when and whether or not it will affect her speech or cognitive abililties. But she has started mouthing words and is starting to look more like the kid you all know or saw in some of those pictures. Her arms are getting to be more controlled and her balance is improving. Most importantly, she is eating really well and is probably gaining back a lot that she lost when we were in the hospital. And today she even picked up a Junie B. Jones and read a few pages. My kid is coming back, slowly but surely. I want her to be able to read--her solace before surgery--during this long convalescence at home so I hope progress on this continues.
Tomorrow we go back to the dreaded radiation oncology clinic at Fitzsimmons for the simulation of her radiology treatments. She will have to lie on a table face down for more than an hour, and be moved and maneuvered and fiddled with so that the technicians can finalize their radiation plan. She already had her radiation masks made, and Bunny had one made too, that she will wear each time to protect the rest of her head when she gets her treatment. Her strength and will power in doing this were something to be proud of. Even though the 7th is her 7th birthday (in 2007, no less) she will begin radiation on that day. We will bring a cake with us to celebrate after she is done, and have no other commitments that day. She will continue radiation five days a week for the next six weeks. Then the week of the 14th we start our weekly visits to the oncology clinic at Children's for chemo and checkups with our nurses and doctor. I'm finding it hard to believe that these places will soon become our haunts, but our doctor said that we will soon get used to this new routine, and this new "normal." I'll be calling friends of friends who we know have gone through this to hear more about how they adjusted. These clinics are warm, friendly places, but the things that go on there are so beyond my understanding that I have a hard time even walking in without shaking.
At least we are back home. After tonight I will have had three whole restful nights in the same bed with my husband and my kids sleeping nearby. When I wake up I don't feel like something is missing, but going to bed and easing into sleep is the hardest.
Love,
Dianna
Glad you all got to see the euphoria of our homecoming, thanks to our wonderful neighbors who showed Allison just how special she really is. The fire truck and visit with the firefighters was especially cool, and one neighbor said there was not a dry eye on the block. I know I cried a river of joy that night and I will not soon forget how wonderful it felt to bring her home. She was overwhelmed with happiness. The look of contentment on her face when she lay down in her own bed was spellbinding.
She may look a little different, with stitches all over the place, and with a couple of new added items in her body (a shunt, mediport), but she is minus one yukky tumor, and she is still the same girl. Everyone wants to know how she is, and I would say she is doing the best she can now that she is back home. You might remember she was diagnosed with posterior fossa syndrome, also called cerebellar mutism, which means basically her coordination is really off and she is not talking yet. Her eyes are still not tracking together, at least not all of the time, but will slowly return to normal. No one knows why some kids get this, but everyone says she will be talking again, we just don't know when and whether or not it will affect her speech or cognitive abililties. But she has started mouthing words and is starting to look more like the kid you all know or saw in some of those pictures. Her arms are getting to be more controlled and her balance is improving. Most importantly, she is eating really well and is probably gaining back a lot that she lost when we were in the hospital. And today she even picked up a Junie B. Jones and read a few pages. My kid is coming back, slowly but surely. I want her to be able to read--her solace before surgery--during this long convalescence at home so I hope progress on this continues.
Tomorrow we go back to the dreaded radiation oncology clinic at Fitzsimmons for the simulation of her radiology treatments. She will have to lie on a table face down for more than an hour, and be moved and maneuvered and fiddled with so that the technicians can finalize their radiation plan. She already had her radiation masks made, and Bunny had one made too, that she will wear each time to protect the rest of her head when she gets her treatment. Her strength and will power in doing this were something to be proud of. Even though the 7th is her 7th birthday (in 2007, no less) she will begin radiation on that day. We will bring a cake with us to celebrate after she is done, and have no other commitments that day. She will continue radiation five days a week for the next six weeks. Then the week of the 14th we start our weekly visits to the oncology clinic at Children's for chemo and checkups with our nurses and doctor. I'm finding it hard to believe that these places will soon become our haunts, but our doctor said that we will soon get used to this new routine, and this new "normal." I'll be calling friends of friends who we know have gone through this to hear more about how they adjusted. These clinics are warm, friendly places, but the things that go on there are so beyond my understanding that I have a hard time even walking in without shaking.
At least we are back home. After tonight I will have had three whole restful nights in the same bed with my husband and my kids sleeping nearby. When I wake up I don't feel like something is missing, but going to bed and easing into sleep is the hardest.
Love,
Dianna
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