Still working on things from this end...we need to schedule a place to stay while Aspen has her surgery. I have learned a lot once again! We don't really qualify for the Ronald McDonald house, and I'm not sure they would want us coming and going at all hours. I always thought everyone stayed there when their kids were having surgery...but it only holds 16 families, you need a referral from a social worker and you can't make reservations, you just have to see if it's available when you get there. Not to mention it's geared towards families with little kids...there is a giant Sully monster from Monster's Inc. in the living room, little tykes tables in the kitchen and a big play room with lots of toddler toys. Most people cook for themselves in the kitchen and share bathrooms. I would feel guilty hogging up a room that a young family really needed!
I think it will need to be a nearby hotel...we just need a place to crash for a few hours a night where we won't disturb people in the middle of the night when we come in. There is a bed and breakfast, but I can't see them wanting us coming and going in the wee hours either. I imagine staying with Aspen until she is REALLY asleep...midnight or later and coming back to the hospital prior to shift change at 7am. One of us might leave earlier and the other stay later, so it would be nice if it were walkable.
I am trying to schedule a tour of the hospital the day we see the surgeon. Hopefully Aspen will feel more comfortable. She is getting a little nervous, and insists she doesn't want a tour because it's all "machines and tubes". I think it will be a much brighter, happier place than our local hospital, which must think tiny windows and multiple shades of khaki are restful. They have big play rooms for all ages and encourage journaling, scrapbooking and art/collage making for her age group after surgery. We are waiting on a call back on that one.
This is a lot of work! Who knew it involved vacation planning?!! I just want to call a travel agent and book the Children's Hospital Package complete with hospital tour, shuttle to the hospital, and get well card on the pillow at night.
Thursday, April 10, 2008
Wednesday, April 9, 2008
Silly Advice
As usual, just when you think you can't take it any more, that things just can't get any worse...you get a break! Yesterday and today were my break...
Monday, on the tail of all of Aspen's stuff I had an appointment with an OB/GYN, which included a biopsy and a recommendation for a hysterectomy. It seems that things would have fallen out by now were they not so enlarged! I am doing some hormone therapy trying to keep things at bay until well after Aspen's surgery...although I have it on good authority that all I need is a little Preparation-H!!
My surgery will be through my c-section because things are so messy. Ken doesn't have the slightest idea of what he's in for since he was in Missouri at Drill Sergeant School when Aspen was born and missed the two weeks of bed rest.
So tomorrow I will take a deep breath and pick up the phone again and schedule an appointment for myself with the Urologist and call the hospital and see if I can get the billing for Aspen's CT scans all straightened out. I was advised to not call, just send them $2 a month (in pennies in a dirty sock) forever...I have wonderfully silly advisers who make me laugh till I cry. But it could be worth several hundred dollars to do some negotiation, so negotiate we will.
Monday, on the tail of all of Aspen's stuff I had an appointment with an OB/GYN, which included a biopsy and a recommendation for a hysterectomy. It seems that things would have fallen out by now were they not so enlarged! I am doing some hormone therapy trying to keep things at bay until well after Aspen's surgery...although I have it on good authority that all I need is a little Preparation-H!!
My surgery will be through my c-section because things are so messy. Ken doesn't have the slightest idea of what he's in for since he was in Missouri at Drill Sergeant School when Aspen was born and missed the two weeks of bed rest.
So tomorrow I will take a deep breath and pick up the phone again and schedule an appointment for myself with the Urologist and call the hospital and see if I can get the billing for Aspen's CT scans all straightened out. I was advised to not call, just send them $2 a month (in pennies in a dirty sock) forever...I have wonderfully silly advisers who make me laugh till I cry. But it could be worth several hundred dollars to do some negotiation, so negotiate we will.
Saturday, April 5, 2008
Taking Care
Aspen took care of herself yesterday afternoon...yes, it's a big deal!! I don't know if it's because she was really exhausted, or she just felt comfortable asking to leave. She didn't want to go with the other girls to play, she just wanted to go home and rest. I am so glad she could make that decision for herself and I didn't have to tell her it was time to go. I haven't told her, "you need to rest" or "it's time to go" yet, we have just talked about how she feels and I keep asking her to take care of herself. I want her to ask to leave or rest if she is tired...she is finally getting it...hooray. I really, really don't ever want any of this stuff...eating, resting, etc. to become a point of struggle for power in our relationship. I tell her when I think things are a good or bad idea, what the potential outcomes are for her choices, and then I let her make the choices...so far, so good!!
Getting rest and eating right are just critical right now and if I start telling her she has to do something she might very well tell me she's not going to, or do just the opposite of what I'm telling her to do. I want her to feel in charge of her body and her life, I don't want her to struggle to wrest control of her life from me, she is already struggling to have control over her pancreas that is out of her control.
Today was terrific, our friends Laura and Dennis and their kids had us over for lunch...they are vegan. She whipped up all kinds of good things that the girls both loved. They played board games afterwards, which was just the right speed for Aspen (who normally can't sit still through one board game, let alone 3!). It was very restful to not have to cook a meal, and not have to worry about Aspen getting worn out.
Laura gave me a great book, The China Study, that is about the health benefits of veganism...what is the right word here, veganality, veganness? Anyway, it would be interesting for anyone who is curious about veganism, who wants a scientific study and not the hippy well being talk.
Getting rest and eating right are just critical right now and if I start telling her she has to do something she might very well tell me she's not going to, or do just the opposite of what I'm telling her to do. I want her to feel in charge of her body and her life, I don't want her to struggle to wrest control of her life from me, she is already struggling to have control over her pancreas that is out of her control.
Today was terrific, our friends Laura and Dennis and their kids had us over for lunch...they are vegan. She whipped up all kinds of good things that the girls both loved. They played board games afterwards, which was just the right speed for Aspen (who normally can't sit still through one board game, let alone 3!). It was very restful to not have to cook a meal, and not have to worry about Aspen getting worn out.
Laura gave me a great book, The China Study, that is about the health benefits of veganism...what is the right word here, veganality, veganness? Anyway, it would be interesting for anyone who is curious about veganism, who wants a scientific study and not the hippy well being talk.
Friday, April 4, 2008
Exhausting Day, Amazing Friends
I started making phone calls a little after 7am this morning...trying to get some answers...I was still on the phone at 10:30am when Ken's dad stopped by to drop off a book, and still in my bathrobe because I hadn't gotten a break to get in the shower!
So here's what we know now...it's a pseudo cyst (the doctor at the children's hospital knew what it was immediately when he saw the CT scans). It's a kind of cyst that turns into cancer if not removed. It's whole job is to grow bigger and take over, so the fact that it isn't bigger is really good. It is encapsulated and has not metastasized still, so that is good news. They want to remove it right away.
We have an appointment with the surgeon on April 18th...I have not researched him, but I had a choice of two and seemed to remember this guy's name, so I went with him. I can change if I want to, but it will push the appointment out another couple of weeks as well.
The surgeon will tell us, based on where the pseudo cyst is in the pancreas how we will get it out. They might be able to get to it with the endoscope, if not they will go ahead and do big surgery and take it out. I don't know any details yet, whether it can be laproscopic or whether it's a large incision, front or back, etc, etc. We will also find out whether they can take just the pseudo cyst or if they need to take part of the pancreas. Standard procedure is usually to take the cyst and a portion of the surrounding pancreas, or to divide the pancreas and remove the bottom section (it's carrot shaped). The pancreas will then try to recover and operate as normally as possible...it can turn out that she would be insulin dependent, or enzyme dependent after such a thing, but right now it all sounds so much better than chemo.
After talking with the doctors, nurses, schedulers, registrars, referral people, CT records people, and relaying to Ken (who was napping on the couch by this time), I was so exhausted. Her name was mixed up on the referral, and I had to call back several times to get it all straight...anyone know Daniel S. Aspen?
By that time it was 10:45 and the girls were supposed to be at girl scouts in 15 minutes for a potluck and award ceremony, and I hadn't made it to church to drop off a bulletin insert yet, and I was still in my bathrobe! And that's where friends and family swooped in and picked up the pieces!
My mom called and said I should have asked her to make a potluck dish, I received a bunch of supportive emails, Lauri took care of the bulletin insert, Joni took care of all the badges and patches and planning for the award ceremony, and life just got back on track and kept going! I have awesome friends!!! Cynthia emailed to remind me I'm not in charge of how things go, just how I respond...hmmm....
I'm really a control freak. I am having trouble having my life be so chaotic...those of you who know me well, know that I like life busy, so if I think it's crazy you can imagine just how wacky it is. I'm feeling like I can't keep my obligations because I suddenly have to spend 3 hours on the phone to take care Aspen, and letting people help...I'm really not used to that. I promised Amy that if we needed anything we would call. I don't know how crazy things have to get before I will call, but I obviously need to work on that and think about when that is.
So, Aspen is good with the children's hospital and surgery as long as she can ride the tram up the hill a few times. She's not worried about being cut open, just the IV, she doesn't like needles. She did ask if she could be asleep for the surgery though, she thought it might be a little freaky to be awake. She's one tough kid.
The girls had a wonderful ceremony and potluck! All the dishes at the potluck were things that Aspen could eat, people were so nice to cook bizarre food they wouldn't normally (thank you Joni and Meredith)! Cierra earned 23 badges, and Aspen earned 22 this year so far. Last year their big goal was cookie sales, this year their goal is to earn every award you can earn at the junior level of scouting. They are well on their way!
So here's what we know now...it's a pseudo cyst (the doctor at the children's hospital knew what it was immediately when he saw the CT scans). It's a kind of cyst that turns into cancer if not removed. It's whole job is to grow bigger and take over, so the fact that it isn't bigger is really good. It is encapsulated and has not metastasized still, so that is good news. They want to remove it right away.
We have an appointment with the surgeon on April 18th...I have not researched him, but I had a choice of two and seemed to remember this guy's name, so I went with him. I can change if I want to, but it will push the appointment out another couple of weeks as well.
The surgeon will tell us, based on where the pseudo cyst is in the pancreas how we will get it out. They might be able to get to it with the endoscope, if not they will go ahead and do big surgery and take it out. I don't know any details yet, whether it can be laproscopic or whether it's a large incision, front or back, etc, etc. We will also find out whether they can take just the pseudo cyst or if they need to take part of the pancreas. Standard procedure is usually to take the cyst and a portion of the surrounding pancreas, or to divide the pancreas and remove the bottom section (it's carrot shaped). The pancreas will then try to recover and operate as normally as possible...it can turn out that she would be insulin dependent, or enzyme dependent after such a thing, but right now it all sounds so much better than chemo.
After talking with the doctors, nurses, schedulers, registrars, referral people, CT records people, and relaying to Ken (who was napping on the couch by this time), I was so exhausted. Her name was mixed up on the referral, and I had to call back several times to get it all straight...anyone know Daniel S. Aspen?
By that time it was 10:45 and the girls were supposed to be at girl scouts in 15 minutes for a potluck and award ceremony, and I hadn't made it to church to drop off a bulletin insert yet, and I was still in my bathrobe! And that's where friends and family swooped in and picked up the pieces!
My mom called and said I should have asked her to make a potluck dish, I received a bunch of supportive emails, Lauri took care of the bulletin insert, Joni took care of all the badges and patches and planning for the award ceremony, and life just got back on track and kept going! I have awesome friends!!! Cynthia emailed to remind me I'm not in charge of how things go, just how I respond...hmmm....
I'm really a control freak. I am having trouble having my life be so chaotic...those of you who know me well, know that I like life busy, so if I think it's crazy you can imagine just how wacky it is. I'm feeling like I can't keep my obligations because I suddenly have to spend 3 hours on the phone to take care Aspen, and letting people help...I'm really not used to that. I promised Amy that if we needed anything we would call. I don't know how crazy things have to get before I will call, but I obviously need to work on that and think about when that is.
So, Aspen is good with the children's hospital and surgery as long as she can ride the tram up the hill a few times. She's not worried about being cut open, just the IV, she doesn't like needles. She did ask if she could be asleep for the surgery though, she thought it might be a little freaky to be awake. She's one tough kid.
The girls had a wonderful ceremony and potluck! All the dishes at the potluck were things that Aspen could eat, people were so nice to cook bizarre food they wouldn't normally (thank you Joni and Meredith)! Cierra earned 23 badges, and Aspen earned 22 this year so far. Last year their big goal was cookie sales, this year their goal is to earn every award you can earn at the junior level of scouting. They are well on their way!
Thursday, April 3, 2008
Unraveling
I came home today and feel like things are unraveling faster than I can fix them...we have a mountain of paperwork for the Children's Hospital, our insurance doesn't want to pay for the CT scans because the hospital did the paperwork wrong and didn't collect the co-pay at the time of service, and our doctor's office called and said the head of pediatric pancreantology reviewed our CT scans and is referring us for surgery...how can we have surgery if we don't have a diagnosis?!
I think all I can do is fill out the paperwork and sleep on it. I will start making phone calls in the morning to find out what kind of surgery (biopsy, lumpectomy, transplant) and what exactly he sees in the CT scans that makes him think this is the way to go. Good thing I did a wee bit of research already, I feel pretty comfortable with this hospital, but I need a diagnosis to find out if this is where we really want/need to be.
I thought if we just needed to take the tumor out and have it done with I would be really good with it, but the thought of them cutting open my baby is suddenly really disturbing...I haven't really gotten used to the idea. I have no idea how my mom stood by my side while I had a c-section, but I guess I'm going to find out.
There was sunshine today though...we got a wonderful gift in the mail from Sally and Ron, and if all the stress wasn't enough to make me cry, that tipped me right over the edge. Thank you so much!! The wild, terrible times are tempered with love.
I think all I can do is fill out the paperwork and sleep on it. I will start making phone calls in the morning to find out what kind of surgery (biopsy, lumpectomy, transplant) and what exactly he sees in the CT scans that makes him think this is the way to go. Good thing I did a wee bit of research already, I feel pretty comfortable with this hospital, but I need a diagnosis to find out if this is where we really want/need to be.
I thought if we just needed to take the tumor out and have it done with I would be really good with it, but the thought of them cutting open my baby is suddenly really disturbing...I haven't really gotten used to the idea. I have no idea how my mom stood by my side while I had a c-section, but I guess I'm going to find out.
There was sunshine today though...we got a wonderful gift in the mail from Sally and Ron, and if all the stress wasn't enough to make me cry, that tipped me right over the edge. Thank you so much!! The wild, terrible times are tempered with love.
Where Crisis is Routine
We got news this morning from the doctor...it was ok, but not the extraordinary news we wanted. The tumor has not changed at all. The diet is really helping to keep the pancreas from spasming, but the tumor is still right there in the middle of it. So the good parts are: her pancreas may be more viable because it isn't being eaten up, the tumor may be removable, it could be a cyst. The bad parts are: it didn't go away, it could be cancer.
We are now on a waiting list at the Children's Hospital to take any available appointment that comes free, the doctor is trying to get us moved up a bit more. He did remind me that what we see as a crisis here is just going to be routine at the specialist's, the only people they see are in crisis. Good adjustment for my thinking, but it doesn't mean I will tolerate complacency.
I am frustrated, life seemed so sunny, but the sun just ducked behind a cloud...I feel like we have done all the right things up to this point: stringent diet, more focus on rest, more focus on family, putting aside extra projects, asking for prayer. And we still don't have a plan, an answer, a diagnosis. I feel like I did it all, and did it well, and it didn't work...yet.
So we continue our diet, and wait for our appointment at the Children's Hospital. I have been doing research on the best places to seek treatment. The children's hospital here is a very good one, it's in the top 50 in the country overall and is one of the very top hospitals for pediatrics. I am looking at all kinds of alternative procedures, blogs, chat groups for survivors, hospital rating sites, doctor rating sites and learning about all the latest and greatest procedures, where they are done and who does them best. Thank you grandpa Ken for getting me started.
I am trying to find out all the possiblities and all the possible treatments for the possiblities...so when we actually find out what it is we will know immediately what treatment we want and where we want to seek it.
The girls had a wonderful day playing outside with cousins and friends. They played pioneer girls all day long and raided the refrigerator for pioneer food...carrots, cucumber, apples, pears, quinoa, bean soup, apple sauce and more. It was great for Aspen, she got to go back to grazing all day with everyone making a game of it so she was just doing what all the other girls were doing!
We are now on a waiting list at the Children's Hospital to take any available appointment that comes free, the doctor is trying to get us moved up a bit more. He did remind me that what we see as a crisis here is just going to be routine at the specialist's, the only people they see are in crisis. Good adjustment for my thinking, but it doesn't mean I will tolerate complacency.
I am frustrated, life seemed so sunny, but the sun just ducked behind a cloud...I feel like we have done all the right things up to this point: stringent diet, more focus on rest, more focus on family, putting aside extra projects, asking for prayer. And we still don't have a plan, an answer, a diagnosis. I feel like I did it all, and did it well, and it didn't work...yet.
So we continue our diet, and wait for our appointment at the Children's Hospital. I have been doing research on the best places to seek treatment. The children's hospital here is a very good one, it's in the top 50 in the country overall and is one of the very top hospitals for pediatrics. I am looking at all kinds of alternative procedures, blogs, chat groups for survivors, hospital rating sites, doctor rating sites and learning about all the latest and greatest procedures, where they are done and who does them best. Thank you grandpa Ken for getting me started.
I am trying to find out all the possiblities and all the possible treatments for the possiblities...so when we actually find out what it is we will know immediately what treatment we want and where we want to seek it.
The girls had a wonderful day playing outside with cousins and friends. They played pioneer girls all day long and raided the refrigerator for pioneer food...carrots, cucumber, apples, pears, quinoa, bean soup, apple sauce and more. It was great for Aspen, she got to go back to grazing all day with everyone making a game of it so she was just doing what all the other girls were doing!
Wednesday, April 2, 2008
Waiting....
Well, again we are waiting, and once again God has provided a great place to be while we wait. Last time it was women's retreat, which was scheduled almost a year prior. This time we are at a play we bought tickets for in August! I am so blown away by how things have worked out. We have been surrounded by friends and family starting with church Sunday, followed by a family birthday celebration, and then up to Puyallup to be with more family and friends for the play...it has been wonderful to be surrounded by family and not sitting at home wondering while I fold laundry.
The doctor actually called today...on his day off, from home...to talk about the results. I was watching a play so I had my phone off and missed his call. He said he would call again in the morning. So now I wonder what would make him call on his day off? It's either really good news or really bad news...praying for extraordinarily good news!!
Got the call from the Children's Hospital today too...our appointment is May 21st, I knew they were busy, but wow! I'm glad I pressed things or we would have been scheduled in June...we were scheduled in June, but as we were talking someone cancelled in May and it happened to be a new patient appointment, so we took it!
Aspen has had a little bit of a tough time being with cousins and having to eat her food...she wants to just not eat. I think she is a little bit embarassed. I just let it go and didn't say anything at lunch and afternoon snack, when everyone else who had eaten lunch was starving. I made her a big dinner...kiwi fruit, applesauce, fifteen bean soup, and jello. She ate it all and went back for more applesauce, I'm so glad! Up until today she has eaten all day long every day...I understand why animals who graze eat all day, it's just hard to get enough energy out of a bunch of vegetables to power a body (especially the size of a cow!).
The doctor actually called today...on his day off, from home...to talk about the results. I was watching a play so I had my phone off and missed his call. He said he would call again in the morning. So now I wonder what would make him call on his day off? It's either really good news or really bad news...praying for extraordinarily good news!!
Got the call from the Children's Hospital today too...our appointment is May 21st, I knew they were busy, but wow! I'm glad I pressed things or we would have been scheduled in June...we were scheduled in June, but as we were talking someone cancelled in May and it happened to be a new patient appointment, so we took it!
Aspen has had a little bit of a tough time being with cousins and having to eat her food...she wants to just not eat. I think she is a little bit embarassed. I just let it go and didn't say anything at lunch and afternoon snack, when everyone else who had eaten lunch was starving. I made her a big dinner...kiwi fruit, applesauce, fifteen bean soup, and jello. She ate it all and went back for more applesauce, I'm so glad! Up until today she has eaten all day long every day...I understand why animals who graze eat all day, it's just hard to get enough energy out of a bunch of vegetables to power a body (especially the size of a cow!).
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