Okay, so this post has nothing to do with having a kid with special needs. But, actually, it kind of does - for me anyway. For just over the past year, I've been keeping my spanish language skills semi-brushed up by attending a community spanish class once a week offerred by a local latino advocacy group, LACA, or Latino Advocacy in Community Affairs. I attend the advanced class, which has been an intimate group of students from different backgrounds and ages. The best part - it's completely affordable. A comparative conversation class offerred through the university would cost over $900 a semester, plus the cost of books and parking. A 10 week class through LACA is only $154 if a student enrolls early. Although it's difficult for me to shed my "mommy" persona and gather the energy to go to class some weeks, it's been a valuable remnant of my previous life that I can keep.
I won't be re-enrolling in class for the next session which starts in January (for reasons I'll explain some other time), but I got some disturbing news from the director of LACA with the enrollment packet for that session. In a letter to students, she wrote:
"Awhile before the recession hit officially, almost all of LACA's company clients dropped their contracts. I have been working with Small Business Development Center and the Business Office Initiatives Womens Center to go back to basic business concepts and re-focus on strategic planning and marketing.We have been struggling to keep the program going. It will take a good balance of company contracts and individual students paying for courses in order to get LACA back on its feet.So I am working very hard to re-think all the business we do, offer the best, unique programs and get the word out to the community. It will take a great deal of effort to also market to companies and obtain new contracts.I thought you should know where LACA stands - that although it is a small business, relatively new (just 8 yrs old), it is not profitable at this time. Every year we just break even.If you are enjoying class and learning, please help spread the word amongst your family members, friends and co-workers! It goes a long way!"
That's what I'm hoping to do here. So, if you are or know someone who wants an affordable, low-stress way to learn or maintain their spanish skills in the Indianapolis area, please consider taking a class through LACA. I promise you won't regret it! Their website is: http://www.lacainc.com/ Tell Brenda I sent you!
Tuesday, November 10, 2009
Friday, August 21, 2009
Where are the parents?
I saw this essay on a listserv and love, love, love it. Many of you may have already seen it but I hadn’t, and after our experience this last month in the hospital following Kaia’s surgery, I could really relate to this article.
By Sue Stuyvesant, Parent
Hey everyone. For those of you who don't know me (I'm only an occasional poster) I am mom to Michelle, 9 years old, microcephalic, athetoid/spastic CP, cortical visual impairment, seizure disorder -- and CUTE! OK, now for the reason I'm posting.
To make a long story short, earlier this week a question was asked by some nitwit official as to why there weren't more parents (of special needs kids) involved in the local PTA and other issues that have come up that directly involve our kids. His question, which was passed on to me was, "Where are the parents?" I went home that night, started thinking - and boy was I pi**ed - and banged this "little" essay out the next day on my lunch break. By the way, I took copies of this to the school board meeting that night, gave it to a couple of influential people and it WILL get around.............
Where are the parents?
They are on the phone to doctors and hospitals and fighting with insurance companies, wading through the red tape in order that their child's medical needs can be properly addressed. They are buried under a mountain of paperwork and medical bills, trying to make sense of a system that seems designed to confuse and intimidate all but the very savvy.
Where are the parents?
They are at home, diapering their 15 year old son, or trying to lift their 100 lb. daughter onto the toilet. They are spending an hour at each meal to feed a child who cannot chew, or laboriously and carefully feeding their child through a g-tube. They are administering medications, changing catheters and switching oxygen tanks.
Where are the parents?
They are sitting, bleary eyed and exhausted, in hospital emergency rooms, waiting for tests results to come back and wondering, "Is this the time when my child doesn't pull through?" They are sitting patiently in hospital rooms as their child recovers from yet another surgery to lengthen hamstrings or straighten backs or repair a faulty internal organ. They are waiting in long lines in county clinics because no insurance company will touch their child.
Where are the parents?
They are sleeping in shifts because their child won't sleep more than 2 or 3 hours a night, and must constantly be watched, lest he do himself, or another member of the family, harm. They are sitting at home with their child because family and friends are either too intimidated or too unwilling to help with child care and the state agencies that are designed to help are suffering cut backs of their own.
Where are the parents?
They are trying to spend time with their non-disabled children, as they try to make up for the extra time and effort that is critical to keeping their disabled child alive. They are struggling to keep a marriage together, because adversity does not always bring you closer. They are working 2 and sometime 3 jobs in order to keep up with the extra expenses. And sometimes they are a single parent struggling to do it all by themselves.
Where are the parents?
They are trying to survive in a society that pays lip service to helping those in need, as long as it doesn't cost them anything. They are trying to patch their broken dreams together so that they might have some sort of normal life for their children and their families.
They are busy, trying to survive!
Sue Stuyvesant 10/15/96: Permission to duplicate or distribute this document is granted with the provision that the document remains intact.
Sue passed away in October 2003. Michelle passed away a week before she was to turn 18 in September 2005.
By Sue Stuyvesant, Parent
Hey everyone. For those of you who don't know me (I'm only an occasional poster) I am mom to Michelle, 9 years old, microcephalic, athetoid/spastic CP, cortical visual impairment, seizure disorder -- and CUTE! OK, now for the reason I'm posting.
To make a long story short, earlier this week a question was asked by some nitwit official as to why there weren't more parents (of special needs kids) involved in the local PTA and other issues that have come up that directly involve our kids. His question, which was passed on to me was, "Where are the parents?" I went home that night, started thinking - and boy was I pi**ed - and banged this "little" essay out the next day on my lunch break. By the way, I took copies of this to the school board meeting that night, gave it to a couple of influential people and it WILL get around.............
Where are the parents?
They are on the phone to doctors and hospitals and fighting with insurance companies, wading through the red tape in order that their child's medical needs can be properly addressed. They are buried under a mountain of paperwork and medical bills, trying to make sense of a system that seems designed to confuse and intimidate all but the very savvy.
Where are the parents?
They are at home, diapering their 15 year old son, or trying to lift their 100 lb. daughter onto the toilet. They are spending an hour at each meal to feed a child who cannot chew, or laboriously and carefully feeding their child through a g-tube. They are administering medications, changing catheters and switching oxygen tanks.
Where are the parents?
They are sitting, bleary eyed and exhausted, in hospital emergency rooms, waiting for tests results to come back and wondering, "Is this the time when my child doesn't pull through?" They are sitting patiently in hospital rooms as their child recovers from yet another surgery to lengthen hamstrings or straighten backs or repair a faulty internal organ. They are waiting in long lines in county clinics because no insurance company will touch their child.
Where are the parents?
They are sleeping in shifts because their child won't sleep more than 2 or 3 hours a night, and must constantly be watched, lest he do himself, or another member of the family, harm. They are sitting at home with their child because family and friends are either too intimidated or too unwilling to help with child care and the state agencies that are designed to help are suffering cut backs of their own.
Where are the parents?
They are trying to spend time with their non-disabled children, as they try to make up for the extra time and effort that is critical to keeping their disabled child alive. They are struggling to keep a marriage together, because adversity does not always bring you closer. They are working 2 and sometime 3 jobs in order to keep up with the extra expenses. And sometimes they are a single parent struggling to do it all by themselves.
Where are the parents?
They are trying to survive in a society that pays lip service to helping those in need, as long as it doesn't cost them anything. They are trying to patch their broken dreams together so that they might have some sort of normal life for their children and their families.
They are busy, trying to survive!
Sue Stuyvesant 10/15/96: Permission to duplicate or distribute this document is granted with the provision that the document remains intact.
Sue passed away in October 2003. Michelle passed away a week before she was to turn 18 in September 2005.
Saturday, August 1, 2009
How important is breastfeeding?
Pretty important, according to the World Health Organization. In this article, http://news.yahoo.com/s/nm/20090731/hl_nm/us_un_mothers_1, a WHO spokesperson says that "Raising to 90 percent the global breastfeeding rate for infants to six months would save an estimated 13 percent of the 10 million under-age-5 deaths a year". Wow! That's huge. If you don't want to do the math, that's 1.3 million children's lives each year.
Articles like this are inspiring to me and help me realize how important what I've done and continue to do is for Kaia. Yep, you guessed it: she's still breastfeeding. Past two and still breastfeeding.
She loves it and so do I. And I know that I'm doing the best thing for her. Especially during chemo. So if you've got an opinion about how breastfeeding a toddler or God forbid, tandem nursing a baby and toddler, may make you uncomfortable, I really don't want to hear it. I'm more than happy to direct you to articles like the above to drive home the point that breastfeeding is the healthiest, sanest option for feeding a baby, and yes, even a toddler.
I really don't mean to sound defensive about this issue, but it is one very close to my heart and I just want equal airtime for the benefits of nursing.
1.3 million lives. That's pretty convincing.
Articles like this are inspiring to me and help me realize how important what I've done and continue to do is for Kaia. Yep, you guessed it: she's still breastfeeding. Past two and still breastfeeding.
She loves it and so do I. And I know that I'm doing the best thing for her. Especially during chemo. So if you've got an opinion about how breastfeeding a toddler or God forbid, tandem nursing a baby and toddler, may make you uncomfortable, I really don't want to hear it. I'm more than happy to direct you to articles like the above to drive home the point that breastfeeding is the healthiest, sanest option for feeding a baby, and yes, even a toddler.
I really don't mean to sound defensive about this issue, but it is one very close to my heart and I just want equal airtime for the benefits of nursing.
1.3 million lives. That's pretty convincing.
Wednesday, June 10, 2009
Up all night
Paul’s coworkers are an amazing group of people. When they heard about Kaia’s newest diagnosis of cancer, they got together and bought her a bunch of hats (for when she loses her hair from the chemo), toys (for those chemo and doctor visits), and a couple of the hugest stuffed animals.
One was a giant stuffed Minnie Mouse. It’s as tall as Kaia. Kaia wasn’t too interested in her at first. Our living room is getting overtaken by her toys so I decided to put some stuff up in her room, including Minnie. I put Minnie with a couple other large stuffed animals right by the crib.
That night it took Kaia an extra long time to go to sleep. We still use a baby moniter and I heard her awake, cooing, making happy squeals and noises all night long. I don’t think she slept more than a couple hours. I didn’t go to her because she wasn’t fussing, but I tried to figure out why she was up.
Could it be the sleep disturbances so common with her syndrome finally manifesting? Could it be the side effects of the chemo keeping her up? Maybe she’s constipated and just can’t sleep.
The next day she fell asleep quickly for her nap and slept a good solid two hours – a great nap for her. Not a surprise after being awake practically all night long. At the end of her nap, I heard her awakening and making the same excited squeals and coos as the night before. As I cracked the door to get her, I saw her stretched out in the crib on her belly, both hands and arms completely extended through the crib rails, reaching out and playing with Minnie.
Aha! That’s why she was up all night. She was just having a party with Minnie all night!
Minnie is no longer a resident in Kaia's room. She has moved to the hall outside Kaia's door, and Kaia very happily greets Minnie each morning and after waking from her nap with hugs and squeals.
And all sleep order is restored in our house.
One was a giant stuffed Minnie Mouse. It’s as tall as Kaia. Kaia wasn’t too interested in her at first. Our living room is getting overtaken by her toys so I decided to put some stuff up in her room, including Minnie. I put Minnie with a couple other large stuffed animals right by the crib.
That night it took Kaia an extra long time to go to sleep. We still use a baby moniter and I heard her awake, cooing, making happy squeals and noises all night long. I don’t think she slept more than a couple hours. I didn’t go to her because she wasn’t fussing, but I tried to figure out why she was up.
Could it be the sleep disturbances so common with her syndrome finally manifesting? Could it be the side effects of the chemo keeping her up? Maybe she’s constipated and just can’t sleep.
The next day she fell asleep quickly for her nap and slept a good solid two hours – a great nap for her. Not a surprise after being awake practically all night long. At the end of her nap, I heard her awakening and making the same excited squeals and coos as the night before. As I cracked the door to get her, I saw her stretched out in the crib on her belly, both hands and arms completely extended through the crib rails, reaching out and playing with Minnie.
Aha! That’s why she was up all night. She was just having a party with Minnie all night!
Minnie is no longer a resident in Kaia's room. She has moved to the hall outside Kaia's door, and Kaia very happily greets Minnie each morning and after waking from her nap with hugs and squeals.
And all sleep order is restored in our house.
Tuesday, June 9, 2009
Two little girls
I know it’s been a while since I last posted an update. I won’t be doing that today – I don’t have the time or energy. I just wanted to share the cutest picture. This is Kaia a month before she turns two and her Great Grandma Alice when she was two years old. Kaia is named in part for Great Grandma Alice and also for her Grandma Linda. We selected the common letters in their names to form Kaia’s middle name: Li. Kaia also shares something else in common with her Great Grandma Alice – her birthday. Both were born on June 22nd, 90 years apart. We had a lot of fun getting Kaia ready for this picture. It was her Grandma Linda’s brainchild and the result is stunning. Kaia will hopefully get to see her Great Grandma Alice again in July, when her Uncle Dave gets married in Minnesota. Oh, and the dress that Kaia is wearing in the picture was a gift from a very generous friend from my cp mom's group - Thanks Lynn!
Sunday, May 17, 2009
Reeling
It was another full week. I used to think that our life was full – with so many therapies each week and the doctor visits that Kaia required. Right now I’m just spinning. Here’s the update on what we found out this last week:
I couldn’t wait until last Tuesday so I called the surgeon’s office Monday afternoon to check to see if they had the results of the biopsy. They had received them early that morning. Their hunch was right: the final pathology report showed that Kaia does indeed have Wilms Tumor. The surgeon told me he had spoken with the oncologist that morning and that they would be calling me later the same day.
They didn’t call Monday so I called them Tuesday morning and the oncologist finally called me back late Tuesday afternoon. She was more than willing to talk with me over the phone and also had us set up the next day for several tests and an appointment with her. Kaia was scheduled for a sedated CT chest scan on Wednesday but when the nurse called to ask the pre-sedation questions and I told her that Kaia still had her cold from the prior week, she didn’t think that they would be comfortable doing it. She said they were canceling that test.
Wednesday we spent the whole day at the new-to-us childrens hospital. We were in the building for over 9 hours. Kaia had an EKG, an echocardiogram, a chest xray, and a did end up having the chest CT scan. They wanted to make sure the tumors haven't metastasized (they haven't, which is good news) and get baseline heart studies since some of the chemo agents can damage the heart. They ended up thinking Kaia was okay to be sedated for the chest CT, but she had already breastfed upon awakening that morning, so she had to wait 6 hours before she could be sedated. I do get frustrated and don’t know how we are supposed to keep Kaia gaining weight when they are constantly restriciting her food intake in preparation for procedures. Kaia couldn’t eat that day until 4pm. She also had more bloodwork and another urine test and we met with the oncologist there. Needless to say, it was a very long day.
The oncologist at the new children’s hospital’s plan is for Kaia to have surgery next week to place a port, and potentially get ear tubes and an unconcious hearing test (which we've been trying to coordinate for awhile now). They want her to start the first round of chemo immediately following the surgery, but we still haven't committed to anything in our minds or signed the consent. We just let them schedule it so that it's available if we decide to go down that road.
After six weeks of chemo, they want to scan the kidney to check for tumor shrinkage, and do a partial nephrectomy to remove the tumors if they feel it is safe to do so. The danger is damaging the kidney, which the doctor said is a significant chance with Kaia’s situation. That’s the scary part of all this. But surgery is the definitive treatment for Wilms, and without it, the tumors will likely regrow. Without chemo, they could continue to grow, burst the kidney, obviously impair renal function, and metastasize. Uggh. Just thinking about it makes me sick to my stomach.
Thursday we had a bit of normalcy as she went to horse therapy and had OT right afterward. I just realized reading that sentence how funny that sounded - 2 therapies in a day is what is normal for us! Kaia had an awesome session on the horse and is getting more and more interactive with the therapists and other kids there. It brings so much joy to my heart to watch her there. She looked so big when they had her standing while riding the horse.
Friday morning we were planning to leave for the regional conference in Ohio for her syndrome. We really just needed to get away from all the doctors, hospitals, and cancer stuff for a couple days.
But, I started to have second thoughts about going to the conference. Thursday evening arrived, we hadn’t even started packing, and I felt overwhelmed by the thought of having to do more “stuff”. I also didn’t want to spend the whole weekend talking about this new challenge and explaining the whole timeline, treatment options, and what this means for Kaia. That’s why I’ve directed selected family and friends to this blog. I just can’t keep repeating this information over and over again. It saps my energy and siphons even more time to thinking about cancer. Add to all that, I was feeling really rundown because I haven’t been sleeping well all week and hadn’t gotten more than 5 hours a sleep each night, and I felt like I was coming down with a cold. The whole trip/event started to seem less and less appealing. We had our respite provider Thursday evening because we were planning on packing, but we decided to go out for a quick dinner and together felt like it was best to make things less stressful on ourselves and stay home. I just feel so vulnerable, so stressed right now. My instinct is to circle the wagons and give ourselves time to absorb everything, let the feelings sink in, and make some decisions. This is our new reality, and it still seems surreal to me.
That night, at 11pm mind you, another parent organizing the event called to verify we were still coming. First of all, who does those kind of calls at 11pm? She is in the same time zone as us, so she definitely knew what time it was. Then, when I explained what was happening with Kaia, and why we wouldn’t be attending, she started pressuring me to still attend. She said, “Who better to understand what you are going through than your 22q family?” That comment struck me. I know these people get the 22q13 thing. All of them have a child with the syndrome. Most of their kids are older and they are veterans with it. But kidney cancer? Give me a break. How could they understand? None of their kids have it. Just like the cleft lip and palate, Kaia is the only documented kiddo with 22q13 that also has kidney cancer. I understood what this lady was saying about garnering support in a tough time, but I couldn’t help feeling like it was more important to her that the attendance was good for her event than listening to what I was saying about needing some time at home with my family to absorb this new diagnosis.
We also knew we wanted to go back to the original childrens hospital (heretofore CH1) with all the new studies and see if their treatment recommendation would be any different. Since we were planning to leave Friday morning, we had set up an appointment for next Tuesday with the oncologist at CH1, but I felt like that wouldn’t give us enough time to process any differences in treatment plans and make a decision in enough time to reasonably cancel the procedures at CH2 and set up treatment at CH1 if we decided to go that route. So we called Friday morning and they were able to accommodate us with an appointment that morning. The last thing I wanted to do was to go to another hospital or see another doctor but I wasn’t going to feel good if we didn’t consider all our options and have adequate time to do so.
Surprisingly, or not so surprisingly, their recommendations were indeed different. I’m starting to appreciate how vastly different doctors can be in their approaches to treatment. CH2 took a very reasonable, measured approach to the treatment they recommended. CH1, in contrast, staged Kaia’s cancer further (Stage 3 as opposed to Stage 1 or 2), and therefore recommended a more aggressive, longer course of treatment. That variability in staging shouldn’t exist but since Kaia only has the one kidney and they can’t do surgery to remove it initially, some clinical opinion is involved. I wasn’t surprised that CH1 was more aggressive, considering how they approached the biopsy compared to CH2.
Now we have some decisions to make. Tough decisions. Decisions about what extent of treatment to pursue and where to have it done. There are advantages and disadvantages for us in each facility. What we need to figure out is which one will be the best one for Kaia and for us over the next several months. We’re also considering an a la carte approach – chemotherapy at one, surgeries at the other. That would make things slightly more complicated, but it may be the best for Kaia. I also know we have the choice as the healthcare consumer to change providers at any time. Paul commented how lucky we are to have two excellent facilities in town between which to choose.
Since so many people have asked what Wilms Tumors are, I’ve posted a new link on the right hand side of the blog to the National Cancer Institute info page on Wilms. It has some general info and some links for more detailed info regarding staging and treatment.
I’m glad now that we chose to stay home this weekend. As of Sunday morning, I have a raging cold that kept me up much of the night last night. That wouldn’t have been fun for any of us staying in a hotel and sharing the room with Kaia. Yesterday, though, we took Kaia to the zoo which is always a great time for her and us, and utilized our respite provider in the evening to go on a date.
I have to say that I have felt incredibly supported at times this week. I want to thank everyone who sent positive thoughts, prayers, emails, phone calls, and offers of help. I really appreciate so much knowing that you all are there. It has kept me uplifted during an otherwise rough week.
I've noticed that it is harder for some people when we tell them the diagnosis. They don't know what to say and I can sense how uncomfortable it is for them. Paul even said how he felt sorry for them. You can see the shocked look in their eyes. They are speechless. I understand that. But it's nice when someone reaches out instead of backing away because they're uncomfortable.
It’s a week of decisions ahead and once again I’m going to ask for your thoughts and prayers for us to make the right decisions for Kaia and for strength to get through all this. We’ll keep you updated.
I couldn’t wait until last Tuesday so I called the surgeon’s office Monday afternoon to check to see if they had the results of the biopsy. They had received them early that morning. Their hunch was right: the final pathology report showed that Kaia does indeed have Wilms Tumor. The surgeon told me he had spoken with the oncologist that morning and that they would be calling me later the same day.
They didn’t call Monday so I called them Tuesday morning and the oncologist finally called me back late Tuesday afternoon. She was more than willing to talk with me over the phone and also had us set up the next day for several tests and an appointment with her. Kaia was scheduled for a sedated CT chest scan on Wednesday but when the nurse called to ask the pre-sedation questions and I told her that Kaia still had her cold from the prior week, she didn’t think that they would be comfortable doing it. She said they were canceling that test.
Wednesday we spent the whole day at the new-to-us childrens hospital. We were in the building for over 9 hours. Kaia had an EKG, an echocardiogram, a chest xray, and a did end up having the chest CT scan. They wanted to make sure the tumors haven't metastasized (they haven't, which is good news) and get baseline heart studies since some of the chemo agents can damage the heart. They ended up thinking Kaia was okay to be sedated for the chest CT, but she had already breastfed upon awakening that morning, so she had to wait 6 hours before she could be sedated. I do get frustrated and don’t know how we are supposed to keep Kaia gaining weight when they are constantly restriciting her food intake in preparation for procedures. Kaia couldn’t eat that day until 4pm. She also had more bloodwork and another urine test and we met with the oncologist there. Needless to say, it was a very long day.
The oncologist at the new children’s hospital’s plan is for Kaia to have surgery next week to place a port, and potentially get ear tubes and an unconcious hearing test (which we've been trying to coordinate for awhile now). They want her to start the first round of chemo immediately following the surgery, but we still haven't committed to anything in our minds or signed the consent. We just let them schedule it so that it's available if we decide to go down that road.
After six weeks of chemo, they want to scan the kidney to check for tumor shrinkage, and do a partial nephrectomy to remove the tumors if they feel it is safe to do so. The danger is damaging the kidney, which the doctor said is a significant chance with Kaia’s situation. That’s the scary part of all this. But surgery is the definitive treatment for Wilms, and without it, the tumors will likely regrow. Without chemo, they could continue to grow, burst the kidney, obviously impair renal function, and metastasize. Uggh. Just thinking about it makes me sick to my stomach.
Thursday we had a bit of normalcy as she went to horse therapy and had OT right afterward. I just realized reading that sentence how funny that sounded - 2 therapies in a day is what is normal for us! Kaia had an awesome session on the horse and is getting more and more interactive with the therapists and other kids there. It brings so much joy to my heart to watch her there. She looked so big when they had her standing while riding the horse.
Friday morning we were planning to leave for the regional conference in Ohio for her syndrome. We really just needed to get away from all the doctors, hospitals, and cancer stuff for a couple days.
But, I started to have second thoughts about going to the conference. Thursday evening arrived, we hadn’t even started packing, and I felt overwhelmed by the thought of having to do more “stuff”. I also didn’t want to spend the whole weekend talking about this new challenge and explaining the whole timeline, treatment options, and what this means for Kaia. That’s why I’ve directed selected family and friends to this blog. I just can’t keep repeating this information over and over again. It saps my energy and siphons even more time to thinking about cancer. Add to all that, I was feeling really rundown because I haven’t been sleeping well all week and hadn’t gotten more than 5 hours a sleep each night, and I felt like I was coming down with a cold. The whole trip/event started to seem less and less appealing. We had our respite provider Thursday evening because we were planning on packing, but we decided to go out for a quick dinner and together felt like it was best to make things less stressful on ourselves and stay home. I just feel so vulnerable, so stressed right now. My instinct is to circle the wagons and give ourselves time to absorb everything, let the feelings sink in, and make some decisions. This is our new reality, and it still seems surreal to me.
That night, at 11pm mind you, another parent organizing the event called to verify we were still coming. First of all, who does those kind of calls at 11pm? She is in the same time zone as us, so she definitely knew what time it was. Then, when I explained what was happening with Kaia, and why we wouldn’t be attending, she started pressuring me to still attend. She said, “Who better to understand what you are going through than your 22q family?” That comment struck me. I know these people get the 22q13 thing. All of them have a child with the syndrome. Most of their kids are older and they are veterans with it. But kidney cancer? Give me a break. How could they understand? None of their kids have it. Just like the cleft lip and palate, Kaia is the only documented kiddo with 22q13 that also has kidney cancer. I understood what this lady was saying about garnering support in a tough time, but I couldn’t help feeling like it was more important to her that the attendance was good for her event than listening to what I was saying about needing some time at home with my family to absorb this new diagnosis.
We also knew we wanted to go back to the original childrens hospital (heretofore CH1) with all the new studies and see if their treatment recommendation would be any different. Since we were planning to leave Friday morning, we had set up an appointment for next Tuesday with the oncologist at CH1, but I felt like that wouldn’t give us enough time to process any differences in treatment plans and make a decision in enough time to reasonably cancel the procedures at CH2 and set up treatment at CH1 if we decided to go that route. So we called Friday morning and they were able to accommodate us with an appointment that morning. The last thing I wanted to do was to go to another hospital or see another doctor but I wasn’t going to feel good if we didn’t consider all our options and have adequate time to do so.
Surprisingly, or not so surprisingly, their recommendations were indeed different. I’m starting to appreciate how vastly different doctors can be in their approaches to treatment. CH2 took a very reasonable, measured approach to the treatment they recommended. CH1, in contrast, staged Kaia’s cancer further (Stage 3 as opposed to Stage 1 or 2), and therefore recommended a more aggressive, longer course of treatment. That variability in staging shouldn’t exist but since Kaia only has the one kidney and they can’t do surgery to remove it initially, some clinical opinion is involved. I wasn’t surprised that CH1 was more aggressive, considering how they approached the biopsy compared to CH2.
Now we have some decisions to make. Tough decisions. Decisions about what extent of treatment to pursue and where to have it done. There are advantages and disadvantages for us in each facility. What we need to figure out is which one will be the best one for Kaia and for us over the next several months. We’re also considering an a la carte approach – chemotherapy at one, surgeries at the other. That would make things slightly more complicated, but it may be the best for Kaia. I also know we have the choice as the healthcare consumer to change providers at any time. Paul commented how lucky we are to have two excellent facilities in town between which to choose.
Since so many people have asked what Wilms Tumors are, I’ve posted a new link on the right hand side of the blog to the National Cancer Institute info page on Wilms. It has some general info and some links for more detailed info regarding staging and treatment.
I’m glad now that we chose to stay home this weekend. As of Sunday morning, I have a raging cold that kept me up much of the night last night. That wouldn’t have been fun for any of us staying in a hotel and sharing the room with Kaia. Yesterday, though, we took Kaia to the zoo which is always a great time for her and us, and utilized our respite provider in the evening to go on a date.
I have to say that I have felt incredibly supported at times this week. I want to thank everyone who sent positive thoughts, prayers, emails, phone calls, and offers of help. I really appreciate so much knowing that you all are there. It has kept me uplifted during an otherwise rough week.
I've noticed that it is harder for some people when we tell them the diagnosis. They don't know what to say and I can sense how uncomfortable it is for them. Paul even said how he felt sorry for them. You can see the shocked look in their eyes. They are speechless. I understand that. But it's nice when someone reaches out instead of backing away because they're uncomfortable.
It’s a week of decisions ahead and once again I’m going to ask for your thoughts and prayers for us to make the right decisions for Kaia and for strength to get through all this. We’ll keep you updated.
Sunday, May 10, 2009
Another day, another doctor (this is a long one)
Last Monday we saw the pediatric surgeon and oncologist. The update on the masses in her kidney is as follows: April 24th Kaia had a CT scan. The hospital, not surprisingly, could not coordinate the ear tube surgery and ABR hearing test so she just had the CT scan. They still had to sedate her, but it was “conscious sedation” versus full-on anesthesia which was supposed to be much a lighter level of sedation. We were both with her the entire time. It was really hard watching her little body go into the CT machine. She was “drunk” the whole day Friday from the sedation wearing off.
I had a doctor’s appointment for myself scheduled for later that morning and I was planning to cancel it. However, I thought, what better day to keep her strapped in the stroller than today? Normally I don’t like to keep her restrained when she could be practicing moving her body. But that day she was so impaired. She literally was like a drunk getting behind the wheel that just doesn’t realize how impaired they are. She would try to stand up from the floor and walk and would start keeling over and couldn’t understand why her body wasn’t working the way she wanted. It was dangerous for her and stressful for me. So, I strapped her in the stroller, and I went to my appointment and got that out of the way.
That night we also had a parents night out scheduled, which we were going to cancel because Kaia was still so unsteady on her feet. We realized that most of the time they hold her anyway. She’d be safe and there was no real reason not to go. And we really needed a night for us after the day we’d had. We dropped Kaia off and went back out to the car, which now suddenly wouldn’t start. No warning signs before of hesitant starting. Nothing at all previously to indicate that anything might be wrong. Completely out of the blue it just wouldn’t start.
By some lucky twist, we had jumper cables in the trunk and another nice parent gave us a jump. Thankfully Sam's Club was close by and open, so we spent our date night in the parking lot at Sams Club, Paul’s changing of the battery aided by the helpful cashier’s offer of a wrench loan. If it had to happen, it was actually a good thing that it happened when it wasn’t Kaia and I alone in the car, and that it happened on a night when we had time to deal with it and weren’t in a rush to get somewhere. Even after changing the battery, we still had time for a quick dinner before picking up Kaia, who, as it turned out, had a fine evening as well.
We didn’t hear back from Dr Kidney until right before leaving for the parents night out (after much pestering of his office). He informed us that they saw multiple masses in her good kidney with the CT. They didn’t look like anything he had seen before. His initial reaction was that he recommended a biopsy but since he was on his way to a kidney conference he was going to ask a few other docs there what they thought. He also asked the most ridiculous question – “Does she have any other medical issues?” I was like, “well, you know she has this syndrome…22q13 syndrome…yes it affects the kidneys…”, etc. Unbelievable. You’d think he’d look at her chart before he called us, right? Anyway, he asked if this was common with her syndrome. I immediately jumped on the parents’ message board for her syndrome and searched for any kidney issues besides multicystic kidneys. Hydronephrosis, reflux, and multicystic kidney are all reported. But nothing else. So I posted a question specific to the masses and also emailed the researcher after whom Kaia’s syndrome is named and asked if she knew if any kidney masses had been reported with the syndrome. I copied Dr Kidney in on the email as well as her developmental pediatrician. Dr Kidney told us he’d get back to us early the next week. Dr Development had nothing to add.
Monday came and went. Tuesday came and went. Wednesday came and went. Normally I’d be on the phone hounding a doc who didn’t get back to us. But I really wanted to give him time to check all the resources on his end. And, it was all too easy to ignore this. I don’t really want to think about it being anything serious. I knew the options were to wait and watch the masses or biopsy. Scary thoughts if a biopsy came back malignant because she only has the one good kidney.
Kaia had an appointment Thursday morning with her developmental pediatrician. We asked him if he could be a resource for us in coordinating situations like the one last week with the ear tubes and CT. He agreed that was his role. Kaia’s got so many issues that someone needs to be quarterbacking her care. Someone on the inside of the system. Because no matter how loud I scream, none of these people hear. He left the room and immediately started making phone calls. He was already aware of the kidney situation because I had copied him in on the email I had sent Dr. Researcher regarding if any other kids with the syndrome had experienced these types of kidney masses. He just thought that Dr Kidney was following up on it. He coordinated an appointment for us with the oncologist and surgeon. I realized after speaking with him that we may have questions for Dr Kidney too when we met with these other doctors. However, the magic contact was gone. I was now stuck again with the nurses and once again, was given the run around: “No, their office (the other doc’s) needs to be the one coordinating this”, they emphatically stated. Messages were left, no phone calls returned and a repeat of the week with the ear tubes commenced. I’m so done. I know if we want anything done we need to speak directly with the doc and have him do the legwork. I am so sick of this hospital. I can’t believe that all hospitals treat patients and parents this way. There is only one other option in Indianapolis - another children’s hospital that may or may not be better. Indiana just seems to have such an inbred/nepotistic population of medical professionals. Most are trained instate (who would actually want to move here to practice medicine, after all?), they all know each other, and seem to have the same attitude and training regarding patient care. I don’t hold much hope that the other hospital would be much better.
The bottom line is that Kaia saw the surgeon and oncologist Monday. I had been planning on going to a new support group meeting that meets once a month on the first Monday morning of the month. I had one-on-one childcare set up at the meeting for Kaia and I was really excited to go. I felt a little resentful that the appointment meant we couldn’t attend the meeting. However, we both really wanted to hear the doctors’ opinions and recommendations. I was very nervous about what they might say but I was trying to go into it open to receive all the info and get our questions answered. All this just seemed so unfair. I couldn’t even think farther ahead than the next day.
We saw the surgeon first and he was pretty wishy-washy about whether a needle biopsy would be possible. He recommended a laparoscopic biopsy. That is pretty major surgery. She’d need two weeks to recover – couldn’t do any therapies. Then we saw the oncologist who also was wishy-washy but consulted with the surgeon and together they solidified their recommendation for the laparoscopic biopsy. They felt it would give them the best possibility of obtaining an adequate tissue sample and they didn’t want to assume that all the tumors were the same. Since there are two large tumors and several smaller ones, they wanted to at least surgically biopsy the two larger masses and maybe even some of the smaller ones. We were concerned about Kaia’s recovery and possible impact on her kidney function. I also felt that it was excessive to biopsy so much and didn’t agree that we couldn’t assume they were all the same. We were pretty overwhelmed with everything that day, though.
They also drew Kaia’s blood and wanted to get a urine sample. So they placed a couple pieces of gauze in her diaper and we had to walk around and wait for her to urinate so they could get a sample. It was afternoon by that point and we waited until 1:45pm. Kaia hadn’t urinated by that point, I was completely sick of the hospital, and I really wanted to get her home for her nap so that she would take a decent nap and I’d get a little break. I asked if we could just put the wet gauze in a Ziploc and Paul would bring it in the next day. They really didn’t want to let us leave but finally relented and gave me the syringes and a vial to extract the urine from the gauze. Of course Kaia fell asleep on the way home but got a decent nap anyway.
Also, while waiting for the phlebotomist to draw her blood they had sent us to the general waiting area but then came back to get us and asked us to wait in their waiting area. We were a little confused but did so. After they had shut the door, they explained that the other kids in the general waiting area were being tested for a virus. They didn’t say what it was but I was even more paranoid about how in the world we were supposed to keep Kaia healthy in these germ-laden environments. We wash and we wash her and our hands. We use hand sanitizer at every turn.
That night the questions about why they couldn’t do the less invasive needle biopsy kept percolating in my brain. The next morning I called Kaia’s pediatrician and he agreed that it was a rational plan to biopsy by needle and that they should be able to do that. In fact, he felt like considering everything, it was the best thing for Kaia. What if these turned out to be benign? To put her through that invasive of a procedure to find that out when we could’ve done it an easier, less invasive way? Meanwhile, the surgeon’s office was calling us, pushing us to schedule the laparoscopic biopsy. I told them we still had additional questions and I called the oncologist to speak with her about it again. The whole day I was off and on the phone with them about it. She finally called late in the day to say that everyone there – the surgeon, herself, the pediatric and interventional radiologists, felt that a laparoscopic biopsy was the best course and beyond that, the interventional radiologist refused to do a needle biopsy. He felt that in order to obtain adequate tissue he would need to stick her multiple times and she’d be at increased risk for bleeding. Again they pushed us to schedule the surgical biopsy. I was beyond feeling pressured and fed up at that point. I couldn’t help feeling like these people just saw my daughter as a great health insurance package and wanted to do as many things to her as possible to make the most money possible. Encouraged by Kaia’s pediatrician earlier that day, I told them we’d be pursuing a 2nd opinion.
So Kaia’s pediatrician directed us to a surgeon at the other children’s hospital in town. No magical patient relations there either. I couldn’t make the appointment, I was very condescendingly told. The referring doc had to do it. I called the pediatrician’s office (again), who called the surgeon’s office to make the appointment and we were scheduled to see the surgeon the following Tuesday, a week away. Since this was such an urgent matter for the docs at the other hospital, I called (now that Kaia had an appointment made by the pediatrician’s office, they would actually talk to me) and begged for an earlier appointment. I called at least 4 more times. Finally they called me back Wednesday at 1:30pm and said that the original surgeon couldn’t see her but another one was available and how soon could we be there? Kaia needed to be changed and nursed (and would probably fall asleep for her nap as was usual). I still needed to get presentable to leave the house, and Paul still had to pick up the CD of the scans from the other hospital and meet us at the new one. Talk about rushed. We got there at 3pm.
This doc seemed very optimistic that not only could they do the needle biopsy, he agreed that in light of everything, it was the best course for Kaia. Wow – a surgeon that actually wouldn’t do surgery because it was the best thing for the patient not to do it? Astounding. Fortified with hope, we left him so that he could consult with that hospital’s oncologist and to do some more research before coming to a final recommendation for us. This doc also seemed more up to date on the current research/protocols for treatment, or maybe he just actually considered other options and did a better job communicating these to us.
The next day he called and said that they were pretty confident that this was Wilms Tumours. They did indeed recommend a needle biopsy as opposed to laparoscopic biopsy, and in direct contrast with the other hospital, they were not only confident that they could get adequate tissue for a diagnosis, but that they would only have to biopsy one tumor. Due to the tumor location, they were also confident that they could so by insertion through Kaia’s back, thereby avoiding the peritoneal cavity. Biopsying through the peritoneal cavity would change the staging if it indeed is cancer and would mean not only chemotherapy but also radiation. They had a slot the next day on Friday and we took it. This was all happening so fast but I was so glad that I stuck to my guns and had pursued a 2nd opinion. I was still nervous about the general anesthesia but we knew that we wanted to find out what the masses were.
We received the preop registration call from the hospital. We got at least 3 different preop instructions regarding npo/clear fluid timeline restrictions. The biopsy was scheduled for 11am. The first instruction was that I could breastfeed Kaia until 8am. The 2nd was until 5am. The last was nothing by mouth after midnight. The first 2 instructions were from dr’s. The last was from the assistant that did scheduling. She said that babies under 12 months could have breastmilk up to 6 hours before but since Kaia was 22 months she couldn’t have anything after midnight. She kept asking how old Kaia was and repeating that it was breastmilk. I’m sort of starting to feel the toddler breastfeeding discrimination here.
Wouldn’t you know it – Kaia hasn’t had a cold for months now and came down with one Thursday night. I think Paul thought I was making it up because I was so afraid of the general anesthesia, but sure enough when she got up on Friday morning she was sneezing and had a runny nose. Not too surprising after where we had spent the whole week – in hospitals and doctors’ offices. I called the hospital and they told us to bring her in since she didn’t have a fever and that the anesthesiologist would examine her to determine if it was safe to proceed with anesthesia.
The anesthesiologist felt that it was safe to proceed. It was a quick procedure. The radiologist was a little flippant and couldn’t even remember Kaia’s name when he called to tell us he was done and that she was going to recovery. He said they’d be calling us to “let us know when you can go see (long silence) um…your kid.” It would be nice if the doc’s could remember her name but we both agreed we really didn’t care as long as he did a good job in the OR. He said the pathologist’s preliminary report was that it was Wilms Tumour.
By now we knew this is the most common form of renal cancer in children under age 6. It is highly treatable but the standard treatment is removal of the affected kidney followed by chemo. Normally that’s how they do the biopsy too. Since most kids have 2 kidneys, they remove the whole thing, biopsy it, and if it is cancer, there’s no chance of tumor spillage like there is with a needle or laparoscopic biopsy. Since Kaia only has the one functional kidney, that wasn’t an option.
They kept Kaia for 4 hours from the time she woke up for observation since she had a bad experience after the cleft surgery. The good thing was I was able to nurse her immediately when she woke up in the recovery room. They are such Nazis about starting on clear liquids but we had a great nurse in the recovery room who said go ahead to nurse and I was so glad once again that I am still nursing her. She was so comforted by it and nursed off and on the whole time. She was very alert for a while and then fell asleep nursing for a very nice nap.
She was asleep in my arms and my back started to hurt from sitting in that position. It felt sort of like we were on a plane, with her as a lap child, and I was stuck because she had nursed to sleep and if I moved I would wake her. I also started to feel as if the little curtained-off private room area we were in was a prison of sorts. We couldn’t leave. I just wanted to go home. I wanted her IV out, those hospital pj’s off her, and the ambient noise of the hospital to stop. I just hate hospitals. It’s as if time stands still there. It goes in some deep black hole and you can never get it back. It’s like time limbo.
But I took the opportunity to read and actually finally finished El alquimista, the book for my Spanish class that ended on Tuesday. A new session restarts this Tuesday and it’s through a local organization so I don’t receive a grade or anything like that, but it was still bothering me that I hadn’t even found time to finish the book. I get frustrated that I can’t devote the time I’d like to outside of class to studying, reading, and writing.
The one very noticeable difference about the new hospital was how they were obviously more used to caring for kids with special needs. I must have heard the words “g-tube” more times on Friday than I have in my whole life. No one assumed that Kaia could do things that are developmentally appropriate for her age. In fact, they assumed the opposite. We had to ask the nurse who was weighing her if it was okay for Kaia to stand on the scale instead of sitting. And no one assumed that she could walk. I wouldn’t say they were surprised that she could, they just didn’t expect it. That aspect of things was so different. It was refreshing.
And Kaia, well, she actually did better after the anesthesia for the biopsy than she did after the sedation for the CT scan. The anesthesiologist said the agents he used were faster acting. She was totally alert and playing like normal Friday evening. I had such a feeling of relief leaving the hospital and being home with her and Paul that evening. The joy of just being home and having her happy was almost more than I could imagine.
Back to the biopsy itself. I feel so vindicated in our decision to have the needle biopsy rather than the laparoscopic procedure. I hope that if it is cancer, this procedure doesn’t put her at increased risk for metastasis, but the only other options were to treat it like cancer without biopsying it at all, not do anything and just watch it, or proceed with the laparocopic biopsy which would’ve advanced the staging further.
The pathologist will complete the final report by Tuesday. I truly hope they do a thorough job with the tissue that they do have and perform all the tests and stainings in order to rule out anything else. I hope their suspicion that this is Wilms doesn’t hamper a thorough examination of the tissue.
If the final report agrees with the preliminary report, we plan to meet with an oncologist from the new hospital next week and go from there. If it all sounds like a lot, it is. It is overwhelming, yet we are dealing.
I just was not ready for this. Sometimes it seems like nothing is easy with Kaia. Even her drinks are difficult. They are a mixture of whole milk yogurt for thickness, carnation instant breakfast, and either breastmilk, whole milk, or half and half if we’re feeling like she really needs the calories. There’s the fact that she’s not chewing yet. Feeding is a struggle – it’s getting better in some ways but still a struggle. There’s the ever-present fear in the back of my mind that if she doesn’t gain weight the doctors are lurking around the corner watching and waiting to put a feeding tube in her. There’s the constant awareness and reminders required to keep her from w-sitting all the time. There’s the fact that she is still unsteady enough on her feet that she can’t wear shorts or dresses without leggings or her knees will be a bloody pulp from falling.
But we knew all those things were possibilities. Even more than possibilities, they were likely. But cancer??? That’s something I wasn’t expecting.
Not to mention I’ve got my own issues with cancer and traditional treatment. I watched my grandmother, my mom’s twin sister, and my mom, all go the route of traditional western cancer treatment and die a slow death. I have and am watching my sister bravely undergo surgery, chemo and radiation. All the while the cancer progresses. I don’t know if I can put my daughter through that. Part of me believes it might be better to just vibrantly embrace and enjoy the life you have and die when the time is up. But if this is something truly treatable, I can’t deny my daughter that treatment. I think we are just both scared that because she only has the one kidney, we’ll put her through all this: another surgery to place a central line, chemo, possibly radiation, and more sedations for scans. Then the docs may tell us that either the chemo isn’t working and they need to do something stronger, or they may want to surgically remove the tumors. I’m scared to death that if they try to that, they will damage her one good kidney irreparably and she’ll be left without a kidney and need dialysis. And all the prior surgeries and chemo, all that pain, will have been for naught. But all we can do is deal with the info we have at the moment and try to make the wisest choice in consideration of everything.
I know it sounds like we have been consumed by doctors, hospitals, and been bogged down by thoughts of what the future might hold. In a lot of ways that is true.
But, in the midst of all this, there have been moments of great joy over the past couple weeks. There was Kaia starting to sign “My turn” – a huge accomplishment for her, her squeal of surprised delight at the first sight of her new tricycle, and her already almost getting that she needs to pedal the wheels to make it go. There was watching her start to interact and initiate contact with the other kids at horse therapy while the therapists write their notes, and seeing her intense curiosity and slow warming to dogs that the neighbors walk down the block. There is her huge smile when she sneezes and she looks to you to say “Bless you”. There is her progress walking quite skillfully now on uneven terrain like the grass instead of just the sidewalk/driveway. None of these doctors or diagnoses can take those joys away.
And, like Paul said, what he took away from the biopsy on Friday was how well Kaia did. How well she bounced back. How it was harder on him that it seemed to be on her. She really is such a strong girl.
I know that if you are still reading this I can count on you for this request: Pray, if that is what you do, for her. Pray for us. Send us positive energy and warm thoughts like rays of sunshine to warm our souls. Because if this is what they think it is, we are going to need it.
I had a doctor’s appointment for myself scheduled for later that morning and I was planning to cancel it. However, I thought, what better day to keep her strapped in the stroller than today? Normally I don’t like to keep her restrained when she could be practicing moving her body. But that day she was so impaired. She literally was like a drunk getting behind the wheel that just doesn’t realize how impaired they are. She would try to stand up from the floor and walk and would start keeling over and couldn’t understand why her body wasn’t working the way she wanted. It was dangerous for her and stressful for me. So, I strapped her in the stroller, and I went to my appointment and got that out of the way.
That night we also had a parents night out scheduled, which we were going to cancel because Kaia was still so unsteady on her feet. We realized that most of the time they hold her anyway. She’d be safe and there was no real reason not to go. And we really needed a night for us after the day we’d had. We dropped Kaia off and went back out to the car, which now suddenly wouldn’t start. No warning signs before of hesitant starting. Nothing at all previously to indicate that anything might be wrong. Completely out of the blue it just wouldn’t start.
By some lucky twist, we had jumper cables in the trunk and another nice parent gave us a jump. Thankfully Sam's Club was close by and open, so we spent our date night in the parking lot at Sams Club, Paul’s changing of the battery aided by the helpful cashier’s offer of a wrench loan. If it had to happen, it was actually a good thing that it happened when it wasn’t Kaia and I alone in the car, and that it happened on a night when we had time to deal with it and weren’t in a rush to get somewhere. Even after changing the battery, we still had time for a quick dinner before picking up Kaia, who, as it turned out, had a fine evening as well.
We didn’t hear back from Dr Kidney until right before leaving for the parents night out (after much pestering of his office). He informed us that they saw multiple masses in her good kidney with the CT. They didn’t look like anything he had seen before. His initial reaction was that he recommended a biopsy but since he was on his way to a kidney conference he was going to ask a few other docs there what they thought. He also asked the most ridiculous question – “Does she have any other medical issues?” I was like, “well, you know she has this syndrome…22q13 syndrome…yes it affects the kidneys…”, etc. Unbelievable. You’d think he’d look at her chart before he called us, right? Anyway, he asked if this was common with her syndrome. I immediately jumped on the parents’ message board for her syndrome and searched for any kidney issues besides multicystic kidneys. Hydronephrosis, reflux, and multicystic kidney are all reported. But nothing else. So I posted a question specific to the masses and also emailed the researcher after whom Kaia’s syndrome is named and asked if she knew if any kidney masses had been reported with the syndrome. I copied Dr Kidney in on the email as well as her developmental pediatrician. Dr Kidney told us he’d get back to us early the next week. Dr Development had nothing to add.
Monday came and went. Tuesday came and went. Wednesday came and went. Normally I’d be on the phone hounding a doc who didn’t get back to us. But I really wanted to give him time to check all the resources on his end. And, it was all too easy to ignore this. I don’t really want to think about it being anything serious. I knew the options were to wait and watch the masses or biopsy. Scary thoughts if a biopsy came back malignant because she only has the one good kidney.
Kaia had an appointment Thursday morning with her developmental pediatrician. We asked him if he could be a resource for us in coordinating situations like the one last week with the ear tubes and CT. He agreed that was his role. Kaia’s got so many issues that someone needs to be quarterbacking her care. Someone on the inside of the system. Because no matter how loud I scream, none of these people hear. He left the room and immediately started making phone calls. He was already aware of the kidney situation because I had copied him in on the email I had sent Dr. Researcher regarding if any other kids with the syndrome had experienced these types of kidney masses. He just thought that Dr Kidney was following up on it. He coordinated an appointment for us with the oncologist and surgeon. I realized after speaking with him that we may have questions for Dr Kidney too when we met with these other doctors. However, the magic contact was gone. I was now stuck again with the nurses and once again, was given the run around: “No, their office (the other doc’s) needs to be the one coordinating this”, they emphatically stated. Messages were left, no phone calls returned and a repeat of the week with the ear tubes commenced. I’m so done. I know if we want anything done we need to speak directly with the doc and have him do the legwork. I am so sick of this hospital. I can’t believe that all hospitals treat patients and parents this way. There is only one other option in Indianapolis - another children’s hospital that may or may not be better. Indiana just seems to have such an inbred/nepotistic population of medical professionals. Most are trained instate (who would actually want to move here to practice medicine, after all?), they all know each other, and seem to have the same attitude and training regarding patient care. I don’t hold much hope that the other hospital would be much better.
The bottom line is that Kaia saw the surgeon and oncologist Monday. I had been planning on going to a new support group meeting that meets once a month on the first Monday morning of the month. I had one-on-one childcare set up at the meeting for Kaia and I was really excited to go. I felt a little resentful that the appointment meant we couldn’t attend the meeting. However, we both really wanted to hear the doctors’ opinions and recommendations. I was very nervous about what they might say but I was trying to go into it open to receive all the info and get our questions answered. All this just seemed so unfair. I couldn’t even think farther ahead than the next day.
We saw the surgeon first and he was pretty wishy-washy about whether a needle biopsy would be possible. He recommended a laparoscopic biopsy. That is pretty major surgery. She’d need two weeks to recover – couldn’t do any therapies. Then we saw the oncologist who also was wishy-washy but consulted with the surgeon and together they solidified their recommendation for the laparoscopic biopsy. They felt it would give them the best possibility of obtaining an adequate tissue sample and they didn’t want to assume that all the tumors were the same. Since there are two large tumors and several smaller ones, they wanted to at least surgically biopsy the two larger masses and maybe even some of the smaller ones. We were concerned about Kaia’s recovery and possible impact on her kidney function. I also felt that it was excessive to biopsy so much and didn’t agree that we couldn’t assume they were all the same. We were pretty overwhelmed with everything that day, though.
They also drew Kaia’s blood and wanted to get a urine sample. So they placed a couple pieces of gauze in her diaper and we had to walk around and wait for her to urinate so they could get a sample. It was afternoon by that point and we waited until 1:45pm. Kaia hadn’t urinated by that point, I was completely sick of the hospital, and I really wanted to get her home for her nap so that she would take a decent nap and I’d get a little break. I asked if we could just put the wet gauze in a Ziploc and Paul would bring it in the next day. They really didn’t want to let us leave but finally relented and gave me the syringes and a vial to extract the urine from the gauze. Of course Kaia fell asleep on the way home but got a decent nap anyway.
Also, while waiting for the phlebotomist to draw her blood they had sent us to the general waiting area but then came back to get us and asked us to wait in their waiting area. We were a little confused but did so. After they had shut the door, they explained that the other kids in the general waiting area were being tested for a virus. They didn’t say what it was but I was even more paranoid about how in the world we were supposed to keep Kaia healthy in these germ-laden environments. We wash and we wash her and our hands. We use hand sanitizer at every turn.
That night the questions about why they couldn’t do the less invasive needle biopsy kept percolating in my brain. The next morning I called Kaia’s pediatrician and he agreed that it was a rational plan to biopsy by needle and that they should be able to do that. In fact, he felt like considering everything, it was the best thing for Kaia. What if these turned out to be benign? To put her through that invasive of a procedure to find that out when we could’ve done it an easier, less invasive way? Meanwhile, the surgeon’s office was calling us, pushing us to schedule the laparoscopic biopsy. I told them we still had additional questions and I called the oncologist to speak with her about it again. The whole day I was off and on the phone with them about it. She finally called late in the day to say that everyone there – the surgeon, herself, the pediatric and interventional radiologists, felt that a laparoscopic biopsy was the best course and beyond that, the interventional radiologist refused to do a needle biopsy. He felt that in order to obtain adequate tissue he would need to stick her multiple times and she’d be at increased risk for bleeding. Again they pushed us to schedule the surgical biopsy. I was beyond feeling pressured and fed up at that point. I couldn’t help feeling like these people just saw my daughter as a great health insurance package and wanted to do as many things to her as possible to make the most money possible. Encouraged by Kaia’s pediatrician earlier that day, I told them we’d be pursuing a 2nd opinion.
So Kaia’s pediatrician directed us to a surgeon at the other children’s hospital in town. No magical patient relations there either. I couldn’t make the appointment, I was very condescendingly told. The referring doc had to do it. I called the pediatrician’s office (again), who called the surgeon’s office to make the appointment and we were scheduled to see the surgeon the following Tuesday, a week away. Since this was such an urgent matter for the docs at the other hospital, I called (now that Kaia had an appointment made by the pediatrician’s office, they would actually talk to me) and begged for an earlier appointment. I called at least 4 more times. Finally they called me back Wednesday at 1:30pm and said that the original surgeon couldn’t see her but another one was available and how soon could we be there? Kaia needed to be changed and nursed (and would probably fall asleep for her nap as was usual). I still needed to get presentable to leave the house, and Paul still had to pick up the CD of the scans from the other hospital and meet us at the new one. Talk about rushed. We got there at 3pm.
This doc seemed very optimistic that not only could they do the needle biopsy, he agreed that in light of everything, it was the best course for Kaia. Wow – a surgeon that actually wouldn’t do surgery because it was the best thing for the patient not to do it? Astounding. Fortified with hope, we left him so that he could consult with that hospital’s oncologist and to do some more research before coming to a final recommendation for us. This doc also seemed more up to date on the current research/protocols for treatment, or maybe he just actually considered other options and did a better job communicating these to us.
The next day he called and said that they were pretty confident that this was Wilms Tumours. They did indeed recommend a needle biopsy as opposed to laparoscopic biopsy, and in direct contrast with the other hospital, they were not only confident that they could get adequate tissue for a diagnosis, but that they would only have to biopsy one tumor. Due to the tumor location, they were also confident that they could so by insertion through Kaia’s back, thereby avoiding the peritoneal cavity. Biopsying through the peritoneal cavity would change the staging if it indeed is cancer and would mean not only chemotherapy but also radiation. They had a slot the next day on Friday and we took it. This was all happening so fast but I was so glad that I stuck to my guns and had pursued a 2nd opinion. I was still nervous about the general anesthesia but we knew that we wanted to find out what the masses were.
We received the preop registration call from the hospital. We got at least 3 different preop instructions regarding npo/clear fluid timeline restrictions. The biopsy was scheduled for 11am. The first instruction was that I could breastfeed Kaia until 8am. The 2nd was until 5am. The last was nothing by mouth after midnight. The first 2 instructions were from dr’s. The last was from the assistant that did scheduling. She said that babies under 12 months could have breastmilk up to 6 hours before but since Kaia was 22 months she couldn’t have anything after midnight. She kept asking how old Kaia was and repeating that it was breastmilk. I’m sort of starting to feel the toddler breastfeeding discrimination here.
Wouldn’t you know it – Kaia hasn’t had a cold for months now and came down with one Thursday night. I think Paul thought I was making it up because I was so afraid of the general anesthesia, but sure enough when she got up on Friday morning she was sneezing and had a runny nose. Not too surprising after where we had spent the whole week – in hospitals and doctors’ offices. I called the hospital and they told us to bring her in since she didn’t have a fever and that the anesthesiologist would examine her to determine if it was safe to proceed with anesthesia.
The anesthesiologist felt that it was safe to proceed. It was a quick procedure. The radiologist was a little flippant and couldn’t even remember Kaia’s name when he called to tell us he was done and that she was going to recovery. He said they’d be calling us to “let us know when you can go see (long silence) um…your kid.” It would be nice if the doc’s could remember her name but we both agreed we really didn’t care as long as he did a good job in the OR. He said the pathologist’s preliminary report was that it was Wilms Tumour.
By now we knew this is the most common form of renal cancer in children under age 6. It is highly treatable but the standard treatment is removal of the affected kidney followed by chemo. Normally that’s how they do the biopsy too. Since most kids have 2 kidneys, they remove the whole thing, biopsy it, and if it is cancer, there’s no chance of tumor spillage like there is with a needle or laparoscopic biopsy. Since Kaia only has the one functional kidney, that wasn’t an option.
They kept Kaia for 4 hours from the time she woke up for observation since she had a bad experience after the cleft surgery. The good thing was I was able to nurse her immediately when she woke up in the recovery room. They are such Nazis about starting on clear liquids but we had a great nurse in the recovery room who said go ahead to nurse and I was so glad once again that I am still nursing her. She was so comforted by it and nursed off and on the whole time. She was very alert for a while and then fell asleep nursing for a very nice nap.
She was asleep in my arms and my back started to hurt from sitting in that position. It felt sort of like we were on a plane, with her as a lap child, and I was stuck because she had nursed to sleep and if I moved I would wake her. I also started to feel as if the little curtained-off private room area we were in was a prison of sorts. We couldn’t leave. I just wanted to go home. I wanted her IV out, those hospital pj’s off her, and the ambient noise of the hospital to stop. I just hate hospitals. It’s as if time stands still there. It goes in some deep black hole and you can never get it back. It’s like time limbo.
But I took the opportunity to read and actually finally finished El alquimista, the book for my Spanish class that ended on Tuesday. A new session restarts this Tuesday and it’s through a local organization so I don’t receive a grade or anything like that, but it was still bothering me that I hadn’t even found time to finish the book. I get frustrated that I can’t devote the time I’d like to outside of class to studying, reading, and writing.
The one very noticeable difference about the new hospital was how they were obviously more used to caring for kids with special needs. I must have heard the words “g-tube” more times on Friday than I have in my whole life. No one assumed that Kaia could do things that are developmentally appropriate for her age. In fact, they assumed the opposite. We had to ask the nurse who was weighing her if it was okay for Kaia to stand on the scale instead of sitting. And no one assumed that she could walk. I wouldn’t say they were surprised that she could, they just didn’t expect it. That aspect of things was so different. It was refreshing.
And Kaia, well, she actually did better after the anesthesia for the biopsy than she did after the sedation for the CT scan. The anesthesiologist said the agents he used were faster acting. She was totally alert and playing like normal Friday evening. I had such a feeling of relief leaving the hospital and being home with her and Paul that evening. The joy of just being home and having her happy was almost more than I could imagine.
Back to the biopsy itself. I feel so vindicated in our decision to have the needle biopsy rather than the laparoscopic procedure. I hope that if it is cancer, this procedure doesn’t put her at increased risk for metastasis, but the only other options were to treat it like cancer without biopsying it at all, not do anything and just watch it, or proceed with the laparocopic biopsy which would’ve advanced the staging further.
The pathologist will complete the final report by Tuesday. I truly hope they do a thorough job with the tissue that they do have and perform all the tests and stainings in order to rule out anything else. I hope their suspicion that this is Wilms doesn’t hamper a thorough examination of the tissue.
If the final report agrees with the preliminary report, we plan to meet with an oncologist from the new hospital next week and go from there. If it all sounds like a lot, it is. It is overwhelming, yet we are dealing.
I just was not ready for this. Sometimes it seems like nothing is easy with Kaia. Even her drinks are difficult. They are a mixture of whole milk yogurt for thickness, carnation instant breakfast, and either breastmilk, whole milk, or half and half if we’re feeling like she really needs the calories. There’s the fact that she’s not chewing yet. Feeding is a struggle – it’s getting better in some ways but still a struggle. There’s the ever-present fear in the back of my mind that if she doesn’t gain weight the doctors are lurking around the corner watching and waiting to put a feeding tube in her. There’s the constant awareness and reminders required to keep her from w-sitting all the time. There’s the fact that she is still unsteady enough on her feet that she can’t wear shorts or dresses without leggings or her knees will be a bloody pulp from falling.
But we knew all those things were possibilities. Even more than possibilities, they were likely. But cancer??? That’s something I wasn’t expecting.
Not to mention I’ve got my own issues with cancer and traditional treatment. I watched my grandmother, my mom’s twin sister, and my mom, all go the route of traditional western cancer treatment and die a slow death. I have and am watching my sister bravely undergo surgery, chemo and radiation. All the while the cancer progresses. I don’t know if I can put my daughter through that. Part of me believes it might be better to just vibrantly embrace and enjoy the life you have and die when the time is up. But if this is something truly treatable, I can’t deny my daughter that treatment. I think we are just both scared that because she only has the one kidney, we’ll put her through all this: another surgery to place a central line, chemo, possibly radiation, and more sedations for scans. Then the docs may tell us that either the chemo isn’t working and they need to do something stronger, or they may want to surgically remove the tumors. I’m scared to death that if they try to that, they will damage her one good kidney irreparably and she’ll be left without a kidney and need dialysis. And all the prior surgeries and chemo, all that pain, will have been for naught. But all we can do is deal with the info we have at the moment and try to make the wisest choice in consideration of everything.
I know it sounds like we have been consumed by doctors, hospitals, and been bogged down by thoughts of what the future might hold. In a lot of ways that is true.
But, in the midst of all this, there have been moments of great joy over the past couple weeks. There was Kaia starting to sign “My turn” – a huge accomplishment for her, her squeal of surprised delight at the first sight of her new tricycle, and her already almost getting that she needs to pedal the wheels to make it go. There was watching her start to interact and initiate contact with the other kids at horse therapy while the therapists write their notes, and seeing her intense curiosity and slow warming to dogs that the neighbors walk down the block. There is her huge smile when she sneezes and she looks to you to say “Bless you”. There is her progress walking quite skillfully now on uneven terrain like the grass instead of just the sidewalk/driveway. None of these doctors or diagnoses can take those joys away.
And, like Paul said, what he took away from the biopsy on Friday was how well Kaia did. How well she bounced back. How it was harder on him that it seemed to be on her. She really is such a strong girl.
I know that if you are still reading this I can count on you for this request: Pray, if that is what you do, for her. Pray for us. Send us positive energy and warm thoughts like rays of sunshine to warm our souls. Because if this is what they think it is, we are going to need it.
Saturday, May 9, 2009
Happy Mothers Day!
Another mom posted the following article, written by Sandy Banks from the Los Angeles Times, on the message board for Kaia's syndrome. I loved it so much I had to share it here.
http://www.latimes.com/news/local/la-me-banks9-2009may09,0,6592590.column?page=1
These moms know true love
Mothers face tough challenges in raising children with disabilities, but there are rewards in the role.
Sandy Banks May 9, 2009
Deedra Williams doesn't need breakfast in bed or a spa massage to celebrate Mother's Day tomorrow.
She received her gift last weekend at a quiet Montecito retreat from 15 women who, like her, are mothers of children with disabilities. They hiked eucalyptus-shaded hills, listened to music and made collages with pictures cut from magazines. They talked for hours about the challenges of mothering children who may never be able to walk or speak, to go off to college or get married.
And everyone knew better than to interrupt, criticize or offer advice.
"No one tried to fix it here," explained Williams, a mother of two sons -- a "developmentally typical" 7-year-old, and a 14-month-old whose newborn jaundice left him with brain damage, hearing loss and cerebral palsy.
"We can relate to what each one is going through because we're all in the same boat," Williams said as we sat at table at La Casa de Maria Retreat with four other mothers.
"What I took away from this weekend," Williams said, "is acceptance."
And what I took away was a new appreciation for the unconditional mother-love that many of us give lip service to, as we continually push our children to improve themselves, carrying around our mental check-list of all their shortcomings.
Raising a disabled child requires a sort of hyper- vigilance. "Motherhood amplified," Nina Loh called it, describing life with her 7-year-old twins -- a "typical" daughter and a son with spina bifida, who has had 13 surgeries and may need more. "The stakes are so high. And there's really no end in sight."
Woodland Hills therapist Diane Simon Smith knows the feeling well. The mother of two disabled sons, she began offering "Healing the Mother's Heart" retreats six years ago, to give women a safe place to vent "the anger, the guilt, the joy . . . all the feelings."
Smith's first child was born weighing less than 2 pounds. He was blind, mentally retarded and was never able to "walk, talk, sit, use his hands or feed himself," she said. He died of pneumonia at 17. His brother, two years younger and now 21, was born with Fragile X Syndrome, an inherited disorder that causes severe cognitive and behavioral problems.
I asked Smith if she felt cheated, robbed of some of the joys of motherhood.
Not cheated, she said, with its implied resentment and bitterness. Just sad, sometimes, "when I hear my friends talking about what their kids are doing . . . going off to college, getting married.
"Every woman around the table talked of feeling isolated, separated from the larger sisterhood of mothers."I never wanted to be different," said Eileen Sunderland, whose 7-year-old son has autism. "I wanted to fit in. . . . But you can't go to lunch with all the moms at preschool. You can't meet them in the park, because you always have a therapy appointment or a doctor visit to get to."
And what do you talk about, anyway, with a mom who complains that her daughter wants pricey True Religion jeans, when you're trying to get your son to stop flapping his hands like wings.
Still, some said their children's diagnosis provided an odd sort of relief -- a validation of a mother's instinct that something was wrong, or a vindication of their parenting.
"I thought I was an inadequate mother," recalled Lisa Hannifin, whose 4 1/2 -year-old son was diagnosed with autism. "I wondered 'Why am I so stressed out? Why can't I take my boy to the market?' Other kids sit in the cart and behave. There must be something very wrong with me."
For others, the verdict triggered fear, panic and disbelief.
When her daughter, now 5, was diagnosed with autism three years ago, Julia Gosnell "was hyperventilating into a paper bag for 10 minutes."
Gosnell had every prenatal test her doctor offered during her pregnancy, "because I did not want a child with a disability," she said. "I really considered myself too selfish. . . . I was a workaholic . . . not really cut out for raising kids."
But children can stretch a mother's boundaries.
Since November, when Gosnell was laid off, she has been a stay-at-home mom. Last week, the child she once feared might not speak said, "Mommy, I want to teach you a magic trick."
Tears spilled down Gosnell's cheeks as she shared the story. "Her progress has been so astounding in the last seven months, and everybody agrees it's because I'm home working with her. . . . I've learned about patience and love and how to give myself to someone else."
And about how important a mother is to her child.
I had to admit on my drive home that I had visited the retreat to turn those moms into an object lesson. I envisioned this column as a reality check for mothers like me -- a "see, it could be worse" reminder to count your blessings this Mother's Day.
But it was their spirit, as much as their stories, that took me down a different path.
The way every description of a child's disabilities also included the strengths their mothers see: The beautiful smile, the sense of humor, the determination, the innocence.
The way they never labeled their other children "normal," just "developing typically."
How much freer would we all be to love if we could let go of our preconceived notions of what our children should do or be? If I worried less about my daughter's tattoo and appreciated her sense of humor more. Or focused less on the "C" in statistics class and more on the hard work she put in to earn even that.
These women are not saints or martyrs. But they see gifts where others might see only hardships.
"Write this column for them," Smith told me, as the mothers packed their cars to head back to their families. They are not looking for pity or praise, just acceptance of their challenges.
"We're not special," she said. "We're just human beings, doing what we do with love."
Just like every other mother.
http://www.latimes.com/news/local/la-me-banks9-2009may09,0,6592590.column?page=1
These moms know true love
Mothers face tough challenges in raising children with disabilities, but there are rewards in the role.
Sandy Banks May 9, 2009
Deedra Williams doesn't need breakfast in bed or a spa massage to celebrate Mother's Day tomorrow.
She received her gift last weekend at a quiet Montecito retreat from 15 women who, like her, are mothers of children with disabilities. They hiked eucalyptus-shaded hills, listened to music and made collages with pictures cut from magazines. They talked for hours about the challenges of mothering children who may never be able to walk or speak, to go off to college or get married.
And everyone knew better than to interrupt, criticize or offer advice.
"No one tried to fix it here," explained Williams, a mother of two sons -- a "developmentally typical" 7-year-old, and a 14-month-old whose newborn jaundice left him with brain damage, hearing loss and cerebral palsy.
"We can relate to what each one is going through because we're all in the same boat," Williams said as we sat at table at La Casa de Maria Retreat with four other mothers.
"What I took away from this weekend," Williams said, "is acceptance."
And what I took away was a new appreciation for the unconditional mother-love that many of us give lip service to, as we continually push our children to improve themselves, carrying around our mental check-list of all their shortcomings.
Raising a disabled child requires a sort of hyper- vigilance. "Motherhood amplified," Nina Loh called it, describing life with her 7-year-old twins -- a "typical" daughter and a son with spina bifida, who has had 13 surgeries and may need more. "The stakes are so high. And there's really no end in sight."
Woodland Hills therapist Diane Simon Smith knows the feeling well. The mother of two disabled sons, she began offering "Healing the Mother's Heart" retreats six years ago, to give women a safe place to vent "the anger, the guilt, the joy . . . all the feelings."
Smith's first child was born weighing less than 2 pounds. He was blind, mentally retarded and was never able to "walk, talk, sit, use his hands or feed himself," she said. He died of pneumonia at 17. His brother, two years younger and now 21, was born with Fragile X Syndrome, an inherited disorder that causes severe cognitive and behavioral problems.
I asked Smith if she felt cheated, robbed of some of the joys of motherhood.
Not cheated, she said, with its implied resentment and bitterness. Just sad, sometimes, "when I hear my friends talking about what their kids are doing . . . going off to college, getting married.
"Every woman around the table talked of feeling isolated, separated from the larger sisterhood of mothers."I never wanted to be different," said Eileen Sunderland, whose 7-year-old son has autism. "I wanted to fit in. . . . But you can't go to lunch with all the moms at preschool. You can't meet them in the park, because you always have a therapy appointment or a doctor visit to get to."
And what do you talk about, anyway, with a mom who complains that her daughter wants pricey True Religion jeans, when you're trying to get your son to stop flapping his hands like wings.
Still, some said their children's diagnosis provided an odd sort of relief -- a validation of a mother's instinct that something was wrong, or a vindication of their parenting.
"I thought I was an inadequate mother," recalled Lisa Hannifin, whose 4 1/2 -year-old son was diagnosed with autism. "I wondered 'Why am I so stressed out? Why can't I take my boy to the market?' Other kids sit in the cart and behave. There must be something very wrong with me."
For others, the verdict triggered fear, panic and disbelief.
When her daughter, now 5, was diagnosed with autism three years ago, Julia Gosnell "was hyperventilating into a paper bag for 10 minutes."
Gosnell had every prenatal test her doctor offered during her pregnancy, "because I did not want a child with a disability," she said. "I really considered myself too selfish. . . . I was a workaholic . . . not really cut out for raising kids."
But children can stretch a mother's boundaries.
Since November, when Gosnell was laid off, she has been a stay-at-home mom. Last week, the child she once feared might not speak said, "Mommy, I want to teach you a magic trick."
Tears spilled down Gosnell's cheeks as she shared the story. "Her progress has been so astounding in the last seven months, and everybody agrees it's because I'm home working with her. . . . I've learned about patience and love and how to give myself to someone else."
And about how important a mother is to her child.
I had to admit on my drive home that I had visited the retreat to turn those moms into an object lesson. I envisioned this column as a reality check for mothers like me -- a "see, it could be worse" reminder to count your blessings this Mother's Day.
But it was their spirit, as much as their stories, that took me down a different path.
The way every description of a child's disabilities also included the strengths their mothers see: The beautiful smile, the sense of humor, the determination, the innocence.
The way they never labeled their other children "normal," just "developing typically."
How much freer would we all be to love if we could let go of our preconceived notions of what our children should do or be? If I worried less about my daughter's tattoo and appreciated her sense of humor more. Or focused less on the "C" in statistics class and more on the hard work she put in to earn even that.
These women are not saints or martyrs. But they see gifts where others might see only hardships.
"Write this column for them," Smith told me, as the mothers packed their cars to head back to their families. They are not looking for pity or praise, just acceptance of their challenges.
"We're not special," she said. "We're just human beings, doing what we do with love."
Just like every other mother.
Monday, April 27, 2009
We're approved!
For reimbursement from the Family Involvement Fund, that is. The group of families that have kids with 22q13 Deletion Syndrome has a biannual international conference in the even numbered years. We went to that conference in Greenwood, SC last summer. This May a parent near Toledo, OH decided to organize a regional family retreat. We really wanted to go but it seemed a little expensive for a weekend. Mileage (no decent flights from Indy), lodging, and meals all added up just for a weekend.
Then I remembered the Family Involvement Fund. I found out about it last fall. I knew they would cover a conference like last summer’s but I wasn’t sure about a regional family retreat. Unfortunately, we couldn’t get last summer’s conference covered because they operate on a fiscal year and it had already ended by the time I discovered the fund. I did apply for a low muscle tone course that I attended in January and finally received the reimbursement for that course a few weeks ago. That check is actually what reminded me about the fund. I went online, filled out a very easy application, and within 10 days received an approval email for the family retreat next month. We’ll submit receipts for lodging. The mileage and meals are covered at a flat reimbursement rate per mile and per meal respectively. The whole shebang is covered! How exciting! There is a family that lives south of us with a newly diagnosed son close in age to Kaia and I am really hoping they can attend.
So, the next time an educational or support opportunity comes your way regarding your child with special needs, check into the Family Involvement Fund (if you live in Indiana) or see if your state has a similar program. It’s an amazing resource.
Here's a little more info copied directly from the link above:
What is the Family Involvement Fund?
The Family Involvement Fund (FIF) is a reimbursement fund that supports family members of children with disabilities to learn more about their child’s disability and the systems that provide services.
Families may choose to attend conferences, conventions, workshops, public forums or hearings, task force meetings, or other similar activities. Families may also choose to access training and information through online workshops, teleconferences, or webcasts.
In addition, the FIF provides reimbursement for approved purchase of print materials (books, manuals), or other media such as CDs/DVDs, and videos.
Separate funding is also available within the FIF for parents who are asked to participate officially as members on their Local Planning and Coordinating Council (LPCC), its committees, and sponsored activities.
How much is Available from the Family Involvement Fund?
The Family Involvement Fund will reimburse approved applicants up to $250 (for an individual) or $500 (for more than one adult) for the grant year. Awards are per individual or family, not per child. Amounts are subject to change.
What the Family Involvement Fund Does Not Cover
The FIF does not reimburse for therapies or other developmental services, training for specific therapy modalities or academic course work, the purchase of developmental toys, materials, equipment, etc. for specific use by a child or family, and will not reimburse enrolled providers for expenses related to attendance at a training required for credentialing purposes. This fund is not intended for professionals or non-family members to attend trainings on a family’s behalf.
Who Can Apply to the Family Involvement Fund?
The Family Involvement Fund is available to families of children with disabilities, ages birth –through 21 years of age. Family includes parents, siblings, grandparents, and other extended family members, foster parents, legal guardians, and educational surrogate parents.
How do I Apply for the Family Involvement Fund?
You may apply online or print an application from the Family-to-Family website at http://www.inf2f.org/. You may also call or email to request an application form. (See contact information below)
Payer of Last Resort
The Family Involvement Fund is considered a “payer of last resort.” Families are encouraged to seek financial support from other sources before applying to the FIF. Please consider the following:1) Local community service organizations such as Lions Club, Kiwanis, etc.2) The Indiana Governor’s Council for People with Disabilities, Consumer Investment Fund. For information, call 317-232-7700, or go to http://www.in.gov/gpcpd.3) Check conference materials for information on available scholarships.4) Check with local/state disability-related organizations and support groups for information on available scholarships.
Guidelines, Requirements, and Limitations
Attending a Conference
• Should the number of applications for any one conference jeopardize the total funding allotment for families, a cap or other reimbursement restrictions may be instituted.
• Families requesting reimbursement must provide verification of conference attendance with their paperwork.
• Mileage is reimbursed at $.44/mile for 1-500 miles; $.22/mile for 501-3,000 miles; $.0 for over 3,000 miles.
• Reimbursement for meals is a flat rate based on Indiana University guidelines.
Print Materials and Electronic Media• Families are encouraged to first contact our library, the Center for Disability Information & Referral (CeDIR), to determine if the needed materials are available for checkout. (See contact information below)
• Print and electronic materials should be related to a family’s need to understand their child’s disability or special needs and/or the systems that provide services, such as early intervention or special education.
• FIF cannot reimburse for materials purchased for individual child-use such as flash cards, children’s books or videos/DVDs, toys, etc.
Timelines and Procedures
• Applications should be submitted at least 30 days prior to the date of the event.
• Upon approval, you will receive a letter and the forms you will need to fill out and return after the event.
• The FIF will reimburse actual expenses and requires you to submit original receipts.
• If your application is determined to be outside the use of this fund, you will receive a letter of explanation.
Then I remembered the Family Involvement Fund. I found out about it last fall. I knew they would cover a conference like last summer’s but I wasn’t sure about a regional family retreat. Unfortunately, we couldn’t get last summer’s conference covered because they operate on a fiscal year and it had already ended by the time I discovered the fund. I did apply for a low muscle tone course that I attended in January and finally received the reimbursement for that course a few weeks ago. That check is actually what reminded me about the fund. I went online, filled out a very easy application, and within 10 days received an approval email for the family retreat next month. We’ll submit receipts for lodging. The mileage and meals are covered at a flat reimbursement rate per mile and per meal respectively. The whole shebang is covered! How exciting! There is a family that lives south of us with a newly diagnosed son close in age to Kaia and I am really hoping they can attend.
So, the next time an educational or support opportunity comes your way regarding your child with special needs, check into the Family Involvement Fund (if you live in Indiana) or see if your state has a similar program. It’s an amazing resource.
Here's a little more info copied directly from the link above:
What is the Family Involvement Fund?
The Family Involvement Fund (FIF) is a reimbursement fund that supports family members of children with disabilities to learn more about their child’s disability and the systems that provide services.
Families may choose to attend conferences, conventions, workshops, public forums or hearings, task force meetings, or other similar activities. Families may also choose to access training and information through online workshops, teleconferences, or webcasts.
In addition, the FIF provides reimbursement for approved purchase of print materials (books, manuals), or other media such as CDs/DVDs, and videos.
Separate funding is also available within the FIF for parents who are asked to participate officially as members on their Local Planning and Coordinating Council (LPCC), its committees, and sponsored activities.
How much is Available from the Family Involvement Fund?
The Family Involvement Fund will reimburse approved applicants up to $250 (for an individual) or $500 (for more than one adult) for the grant year. Awards are per individual or family, not per child. Amounts are subject to change.
What the Family Involvement Fund Does Not Cover
The FIF does not reimburse for therapies or other developmental services, training for specific therapy modalities or academic course work, the purchase of developmental toys, materials, equipment, etc. for specific use by a child or family, and will not reimburse enrolled providers for expenses related to attendance at a training required for credentialing purposes. This fund is not intended for professionals or non-family members to attend trainings on a family’s behalf.
Who Can Apply to the Family Involvement Fund?
The Family Involvement Fund is available to families of children with disabilities, ages birth –through 21 years of age. Family includes parents, siblings, grandparents, and other extended family members, foster parents, legal guardians, and educational surrogate parents.
How do I Apply for the Family Involvement Fund?
You may apply online or print an application from the Family-to-Family website at http://www.inf2f.org/. You may also call or email to request an application form. (See contact information below)
Payer of Last Resort
The Family Involvement Fund is considered a “payer of last resort.” Families are encouraged to seek financial support from other sources before applying to the FIF. Please consider the following:1) Local community service organizations such as Lions Club, Kiwanis, etc.2) The Indiana Governor’s Council for People with Disabilities, Consumer Investment Fund. For information, call 317-232-7700, or go to http://www.in.gov/gpcpd.3) Check conference materials for information on available scholarships.4) Check with local/state disability-related organizations and support groups for information on available scholarships.
Guidelines, Requirements, and Limitations
Attending a Conference
• Should the number of applications for any one conference jeopardize the total funding allotment for families, a cap or other reimbursement restrictions may be instituted.
• Families requesting reimbursement must provide verification of conference attendance with their paperwork.
• Mileage is reimbursed at $.44/mile for 1-500 miles; $.22/mile for 501-3,000 miles; $.0 for over 3,000 miles.
• Reimbursement for meals is a flat rate based on Indiana University guidelines.
Print Materials and Electronic Media• Families are encouraged to first contact our library, the Center for Disability Information & Referral (CeDIR), to determine if the needed materials are available for checkout. (See contact information below)
• Print and electronic materials should be related to a family’s need to understand their child’s disability or special needs and/or the systems that provide services, such as early intervention or special education.
• FIF cannot reimburse for materials purchased for individual child-use such as flash cards, children’s books or videos/DVDs, toys, etc.
Timelines and Procedures
• Applications should be submitted at least 30 days prior to the date of the event.
• Upon approval, you will receive a letter and the forms you will need to fill out and return after the event.
• The FIF will reimburse actual expenses and requires you to submit original receipts.
• If your application is determined to be outside the use of this fund, you will receive a letter of explanation.
Monday, April 20, 2009
Unnecessary medical procedures?
Antibiotics, podiatric surgery, evt’s, oh my! (to the tune of Lions and tigers and bears, oh my!, From the Wizard of Oz)
A mass. That’s what they saw in Kaia’s kidney today. In her good kidney. Yeah, it was a little scary. But I really wasn’t surprised. I was prepared to hear something like that. Don’t ask me why. I just get these feelings about things. Right now the doc doesn’t know what the mass is. It’s too difficult, daresay impossible, to discern from an ultrasound (the procedure Kaia had today) the difference between blood or a mass. It may be a hemorrhagic cyst or a neoplasm (type of cancer). I really haven’t thought that far ahead yet and I don’t want to. It may be nothing and hopefully that’s the case.
We are supposed to go back within the week for her to have a renal CT. They would’ve fitted Kaia in for a CT this afternoon but couldn’t do it until 4pm. She had to wait until then because the eating restrictions (nothing po 6 hours prior) due to the procedure requiring sedation. Because we found out that she was going to have to undergo sedation we decided to revisit the subject of evt’s (ear vent tubes) – something we’ve been struggling with making a decision about for a few months now. We thought, why not try to include evt’s and an ABR (auditory brainstem response) hearing test while she was under and do it all at once?
I actually started the following blog entry about this topic a couple months ago but never finished it or got around to posting it. Today I will. I started off wanting advice. This is what I wrote: Gentle reader, I’d like your advice. Granted, I should say right from the start that I may not heed any of it. But I am interested in your opinions. Lord knows I get enough from dr’s and therapists. Might as well throw in anonymous internet blog readers, too. The more the merrier.
Here’s the situation and background info: Kaia’s developmental pediatrician suggested that she have a hearing evaluation last November to rule out any hearing loss. Hearing loss is not common with her syndrome, but apparently it is routine to evaluate with any speech delay and craniofacial abnormalities – even though we know that she will most likely have severely delayed speech (maximum of 50 words) to absent speech associated with her syndrome. So we scheduled a hearing test.
The day before the evaluation Kaia came down with a cold. Silly me, I didn’t think anything of it. I thought, a little cold shouldn’t affect hearing. Obviously I was wrong. Since it’s all connected, nasal/sinus congestion can cause fluid in the ears, which in turn can affect hearing. They did a tympanogram which indicated fluid in the ears and then they performed the most unscientific, most subjective hearing eval I’ve ever had the opportunity to witness. Kaia sat on my lap in the soundproof booth. Paul sat in front of her to one side. We were in charge of directing her to look to the front of the booth at a lighted duck when it flashed. There was a speaker on either side of her just behind her. The technician would send souds through a speaker and a little toy would light up in it. The technician started by utilizing the speaker to our left. Kaia quickly learned to turn her head, even before the sound, to the left to see the toy light up. I can’t even tell you how bogus the whole exam seemed. Anyway, the very unscientific result showed that Kaia had a mild hearing loss of about 20 decibels.
The dr advised us to wait a month after her cold and reschedule her for another exam. If the fluid persisted us, he warned us that he would be advising surgery to place evt’s. Wait a second, did he just say surgery? On her ears? When there have been no problems, no ear infections, and we know that she can hear us just fine? Yep, surgery. His rationale was that we wouldn’t want to burden our already challenged daughter with the added challenge of a hearing loss equivalent to plugging both of your ears b/c of the persistent fluid.
At Kaia’s 18 month checkup we asked for her regular pediatrician’s take. Now this is a guy whose judgment I trust. This is the same guy who made the immediate call over the phone that Kaia most absolutely did not need a feeding tube following a failed swallow study. So he’s got my respect. He didn’t think she needed surgery He argued that since no one could guarantee advanced speech develpment with this surgery that it was an unnecessary medical procedure. You go to a surgeon, they want to perform surgery. It’s what they do, he said. What’s the benefit to risk ratio? Here, can the surgeon guarantee improved speech? We know with her syndrome speech delay is not due to hearing deficit but rather brain protein structures. Why subject Kaia to a general anesthesia and surgery when the reward isn’t worth the risks (in his opinion)?
We went back after a month for another test. The result? Flat typanograms, indicating fluid again or still the same fluid from before. The good news: Kaia’s only had one ear infection ever. And that one cleared on its own, no antibiotics. Apparently up to 60% of ear infections are viral and do clear on their own. Kaia’s ped said that they give atb’s out like candy because most parents want them and kids need them to get back into daycares. But I digress. Back to the evt’s: the ENT doc still insisted that evt’s were the way to go for Kaia in spite of her healthy ears because of the now “persistent” ear fluid and her “craniofacial abnormality” (boy was I getting sick of hearing that term).
We decided to wait. Fast forward to present day. I found out we could schedule a hearing eval (sort of a second opinion with no insurance copays) through first steps and we finally got in last week. Results: flat tympanograms again. Still fluid. But still no ear infections. I asked the audiologist to perform the hearing eval anyway. Same exact subjective test, same results, but even more inconclusive. She suggested an ABR hearing test under sedation for objective, accurate results. But, here’s the catch: we couldn’t get the ABR until the fluid cleared (now looking more and more unlikely to happen on its own) or until we chose to do evt’s (they would do both the evts and the ABR at the same time).
Everyone I talk to about this - other moms, the audiologist, everyone - advises that we do the evt’s. For some reason, I’m still not convinced. I think it’s because I’m so hesitant about any medical interventions. I don’t trust that doctors are really putting my daughter’s interests first. I think they are fascinated by her case, follow the current popular trends in medicine like sheep – with no regard for patient individuality, and let’s face it, want to make money and prove their necessity in society.
I’ve since heard of one other alternative to evt’s: some sort of chiropractic massage to relieve the fluid. I haven’t looked into this at all. I was really just hoping the fluid would drain on its own and the issue would resolve.
Today made the decision super easy for me. If Kaia had to be sedated for the renal CT anyway, why not do all of it at once? Get it over this week before I change my mind. You’d think the hospital and doctors would jump at the chance to get this done, right? Incredibly naive thinking on my part. We spent literally the whole day at the hospital today trying to get all the departments involved to coordinate to get this together. I was given the run around, treated downright rude - like a pain in the ass interfering mother who had no right questioning or getting involved in the scheduling process. They could not have cared less that by not putting the effort to coordinate these procedures they would be putting Kaia through the risks associated with anesthesia twice. They did not care a whit. Really makes me feel even more confident in these people that they truly have my daughter’s best interests at heart. I don’t have the time or energy to recount all the ridiculous things I was told and contradictions.
The current status: We’ll either do the CT by itself later this week and may or may not do the evts and abr together at a later date, or the hospital will get their shit together, do the right thing by my daughter, and coordinate so that she can do them all together on Thursday. I’ll keep you posted. Forgive the profanities: I’m just a little pissed right now. It’s been a long day.
A mass. That’s what they saw in Kaia’s kidney today. In her good kidney. Yeah, it was a little scary. But I really wasn’t surprised. I was prepared to hear something like that. Don’t ask me why. I just get these feelings about things. Right now the doc doesn’t know what the mass is. It’s too difficult, daresay impossible, to discern from an ultrasound (the procedure Kaia had today) the difference between blood or a mass. It may be a hemorrhagic cyst or a neoplasm (type of cancer). I really haven’t thought that far ahead yet and I don’t want to. It may be nothing and hopefully that’s the case.
We are supposed to go back within the week for her to have a renal CT. They would’ve fitted Kaia in for a CT this afternoon but couldn’t do it until 4pm. She had to wait until then because the eating restrictions (nothing po 6 hours prior) due to the procedure requiring sedation. Because we found out that she was going to have to undergo sedation we decided to revisit the subject of evt’s (ear vent tubes) – something we’ve been struggling with making a decision about for a few months now. We thought, why not try to include evt’s and an ABR (auditory brainstem response) hearing test while she was under and do it all at once?
I actually started the following blog entry about this topic a couple months ago but never finished it or got around to posting it. Today I will. I started off wanting advice. This is what I wrote: Gentle reader, I’d like your advice. Granted, I should say right from the start that I may not heed any of it. But I am interested in your opinions. Lord knows I get enough from dr’s and therapists. Might as well throw in anonymous internet blog readers, too. The more the merrier.
Here’s the situation and background info: Kaia’s developmental pediatrician suggested that she have a hearing evaluation last November to rule out any hearing loss. Hearing loss is not common with her syndrome, but apparently it is routine to evaluate with any speech delay and craniofacial abnormalities – even though we know that she will most likely have severely delayed speech (maximum of 50 words) to absent speech associated with her syndrome. So we scheduled a hearing test.
The day before the evaluation Kaia came down with a cold. Silly me, I didn’t think anything of it. I thought, a little cold shouldn’t affect hearing. Obviously I was wrong. Since it’s all connected, nasal/sinus congestion can cause fluid in the ears, which in turn can affect hearing. They did a tympanogram which indicated fluid in the ears and then they performed the most unscientific, most subjective hearing eval I’ve ever had the opportunity to witness. Kaia sat on my lap in the soundproof booth. Paul sat in front of her to one side. We were in charge of directing her to look to the front of the booth at a lighted duck when it flashed. There was a speaker on either side of her just behind her. The technician would send souds through a speaker and a little toy would light up in it. The technician started by utilizing the speaker to our left. Kaia quickly learned to turn her head, even before the sound, to the left to see the toy light up. I can’t even tell you how bogus the whole exam seemed. Anyway, the very unscientific result showed that Kaia had a mild hearing loss of about 20 decibels.
The dr advised us to wait a month after her cold and reschedule her for another exam. If the fluid persisted us, he warned us that he would be advising surgery to place evt’s. Wait a second, did he just say surgery? On her ears? When there have been no problems, no ear infections, and we know that she can hear us just fine? Yep, surgery. His rationale was that we wouldn’t want to burden our already challenged daughter with the added challenge of a hearing loss equivalent to plugging both of your ears b/c of the persistent fluid.
At Kaia’s 18 month checkup we asked for her regular pediatrician’s take. Now this is a guy whose judgment I trust. This is the same guy who made the immediate call over the phone that Kaia most absolutely did not need a feeding tube following a failed swallow study. So he’s got my respect. He didn’t think she needed surgery He argued that since no one could guarantee advanced speech develpment with this surgery that it was an unnecessary medical procedure. You go to a surgeon, they want to perform surgery. It’s what they do, he said. What’s the benefit to risk ratio? Here, can the surgeon guarantee improved speech? We know with her syndrome speech delay is not due to hearing deficit but rather brain protein structures. Why subject Kaia to a general anesthesia and surgery when the reward isn’t worth the risks (in his opinion)?
We went back after a month for another test. The result? Flat typanograms, indicating fluid again or still the same fluid from before. The good news: Kaia’s only had one ear infection ever. And that one cleared on its own, no antibiotics. Apparently up to 60% of ear infections are viral and do clear on their own. Kaia’s ped said that they give atb’s out like candy because most parents want them and kids need them to get back into daycares. But I digress. Back to the evt’s: the ENT doc still insisted that evt’s were the way to go for Kaia in spite of her healthy ears because of the now “persistent” ear fluid and her “craniofacial abnormality” (boy was I getting sick of hearing that term).
We decided to wait. Fast forward to present day. I found out we could schedule a hearing eval (sort of a second opinion with no insurance copays) through first steps and we finally got in last week. Results: flat tympanograms again. Still fluid. But still no ear infections. I asked the audiologist to perform the hearing eval anyway. Same exact subjective test, same results, but even more inconclusive. She suggested an ABR hearing test under sedation for objective, accurate results. But, here’s the catch: we couldn’t get the ABR until the fluid cleared (now looking more and more unlikely to happen on its own) or until we chose to do evt’s (they would do both the evts and the ABR at the same time).
Everyone I talk to about this - other moms, the audiologist, everyone - advises that we do the evt’s. For some reason, I’m still not convinced. I think it’s because I’m so hesitant about any medical interventions. I don’t trust that doctors are really putting my daughter’s interests first. I think they are fascinated by her case, follow the current popular trends in medicine like sheep – with no regard for patient individuality, and let’s face it, want to make money and prove their necessity in society.
I’ve since heard of one other alternative to evt’s: some sort of chiropractic massage to relieve the fluid. I haven’t looked into this at all. I was really just hoping the fluid would drain on its own and the issue would resolve.
Today made the decision super easy for me. If Kaia had to be sedated for the renal CT anyway, why not do all of it at once? Get it over this week before I change my mind. You’d think the hospital and doctors would jump at the chance to get this done, right? Incredibly naive thinking on my part. We spent literally the whole day at the hospital today trying to get all the departments involved to coordinate to get this together. I was given the run around, treated downright rude - like a pain in the ass interfering mother who had no right questioning or getting involved in the scheduling process. They could not have cared less that by not putting the effort to coordinate these procedures they would be putting Kaia through the risks associated with anesthesia twice. They did not care a whit. Really makes me feel even more confident in these people that they truly have my daughter’s best interests at heart. I don’t have the time or energy to recount all the ridiculous things I was told and contradictions.
The current status: We’ll either do the CT by itself later this week and may or may not do the evts and abr together at a later date, or the hospital will get their shit together, do the right thing by my daughter, and coordinate so that she can do them all together on Thursday. I’ll keep you posted. Forgive the profanities: I’m just a little pissed right now. It’s been a long day.
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