This is definitely a roller coaster ride; One hour things are normal, the next... major vomiting. Its so hard to watch her be sick. It makes me cry. It makes Tony cry. She wants to eat so bad but can't keep it down. We give her anti nausa meds but we have to force them into her mouth. She screams and we're holding her down. It takes a minimum of two people to give her meds. She spits them out also. We have no idea how much she's injesting. I saw a 14.5 month old at the Chemo clinic with Lukemia. She had a feeding tube. The grandma and grandpa bring her to chemo clinic. They told me the feeding tube is a blessing and that if we could get one, get it sooner rather than later. It makes it easier to give anti nausa meds. I don't know... a feeding tube just sounds so invasive to me. It seems if she needs a feeding tube that its a step backwards. I feel the same about blood transfusions. I don't want her to have to do either. It just makes me feel like she's getting worse not better. I know I'm wrong and that both are just par for the course, but man... It just isn't right to do this to a little baby.
Hopefully tomorrow is better. Oh and Musashi had a pretty large seizure today. We're taking her to the vet. She probably has Epilepsy (i'll check the spelling later). - April
Saturday, May 31, 2008
Friday, May 30, 2008
Life is starting to seem normal....
Yes its true! Life is starting to seem normal. We're home from our Friday Chemo doses and Ashley hasen't vomited since 3 am. Those IV push Zofran drugs really help. Trying to have her take oral meds is difficult so we had the added blessing of the nurses puting anti vomiting meds into her port IV today.
We might go for a boat ride tonight. And we're going to get the mail as a family. I'm excited.
Today we received another AMAZING grocery delivery from my mom's group. You guys are amazing. By the time Ashley is done with all her Chemo, I'll be 30 pounds overweight. I think we're set for food for a while as things are getting more normal. We shouldn't have any over night hospital stays for 2 weeks. Unless she needs a transfusion (often happens with chemo patients and nothing to stress about).
We have received so much love and support. Our neighbors Gib and Eileen have let the dog outside, Deen and Gretchen... we thank them for their offers of playdates for Whitney. Auntie Hana and Uncle Tsu; we are getting your emails and cards. Feel free to keep sending them. We can't often reply to emails as we're really busy but we read all of them and we're saving them. Auntie Cindy and family... thanks so much for all the support and gifts for the girls. Tony took Whitney to Jamba juice tonight and she went to Baskin Robbins and cashed in all the ice cream certificates from Tsu. See the photo of the ice cream she picked out. Grandma Shimizu - we received your gift and card, thank you so much.
And all of the parents and teachers at Northshore Co-0p preschool. I'm getting your emails and I love getting them. I haven't seen you all in so long and please know that I am well and think of you often. Mentally we've gotten a grip on this cancer and it isn't as daunting any longer. She's going to beat it -- I have no doubts about that.
I hope I'm not forgetting anyone. Grandma and Grandpa have been full time employees of the Whitney Malia Nakata babysitting club. And Grandpa has mowed our lawn again. Whew! Its amazing how much work needs to be done around our house.
I need to go for now but I'll post more later. -- April
Feeling Lucky
Got out of Children's today at 5:00. Excited to get home and see Whitney.
Ashley vomited in the morning and again at noon when we were supposed to leave. That 12:00 vomit kept us there an additional 5 hours. We got to the van with a stack of towels and rubber blankets draped over the seats. Ashley vomited in the parking lot. We didn't go back in. She seemed in pretty good spirits so we drove home. We pulled over 3 times. Three towels, three outfits now in a vomit garbage bag. She did ok at home eating a few noodles and rice and fell asleep at 9:00. Back up at 1:00, but happy dancing watching Elmo. She just vomited at 3:00. We finally were able to give her more nausea medicine. She seems to be holding it down and now is getting sleepy. We are back at Children's at 11:00 today , just 7 hours from now. Hope to get some sleep and hoping Whitney sleeps in late. I've got another stack of towels for the ride in at 11. I'm doing some chemo laundry now.
Some statistics: there are only about 100 reported case of Hepatoblastoma a year in the country. Of the 100, 87 are boys, 13 are girls. Also of the 100 only 25 get to cut it out on the first shot. That means that 3 or 4 girls in the US have the diagnosis that Ashley had and the prognosis. Stage 1 with a short chemotherapy regiment. We always knew Ashley was one of a kind.
We have met other parents at Children's that would do anything for the Stage 1 with 12 weeks of Chemo and survivability in the 90%'s. We met a parent from Alabama. Her 3 month old has Leukemia. They gave her 20% chance of living after diagnosis. She is 9 months now. The odds for her went to 40% after a bone marrow match was found. They came to Children's because the odds at Children's brings it to 75%. They live with the fear that we had for the first week or so all the time. They have left their jobs and live at the Ronald Mcdonald house down the street. They have been here since March. WE ARE LUCKY!
We are lucky that Children's is 9 mile away and they are top 10 in the country for Cancer.
We are lucky that Dr. Donna and Dr. Wu found the tumor on May 9th.
We are lucky they think they got it all and it is stage one.
We are lucky that our Chemo is only 12 weeks and not 3 years like some kids.
Children's has been incredible. We saw Minnie and Micky handing out stuffed animals yesterday. Too bad Ashley was still in recovery. They have new toys that have been donated, afghans that have been knitted, clowns, musicians, and volunteers. We had a volunteer come to our room bring us toys and and afghan and a latte. She had a bag. We asked her where she got it and she replied it was a gift to her and that she get so many compliments on it. It was one of Uncle Wayne's sparrow bags. I told her that was my Uncle Wayne Nakata and this is Ashley Nakata. She was excited.
Ashley just fell asleep in April's lap. I'm going too.
Tony
Ashley vomited in the morning and again at noon when we were supposed to leave. That 12:00 vomit kept us there an additional 5 hours. We got to the van with a stack of towels and rubber blankets draped over the seats. Ashley vomited in the parking lot. We didn't go back in. She seemed in pretty good spirits so we drove home. We pulled over 3 times. Three towels, three outfits now in a vomit garbage bag. She did ok at home eating a few noodles and rice and fell asleep at 9:00. Back up at 1:00, but happy dancing watching Elmo. She just vomited at 3:00. We finally were able to give her more nausea medicine. She seems to be holding it down and now is getting sleepy. We are back at Children's at 11:00 today , just 7 hours from now. Hope to get some sleep and hoping Whitney sleeps in late. I've got another stack of towels for the ride in at 11. I'm doing some chemo laundry now.
Some statistics: there are only about 100 reported case of Hepatoblastoma a year in the country. Of the 100, 87 are boys, 13 are girls. Also of the 100 only 25 get to cut it out on the first shot. That means that 3 or 4 girls in the US have the diagnosis that Ashley had and the prognosis. Stage 1 with a short chemotherapy regiment. We always knew Ashley was one of a kind.
We have met other parents at Children's that would do anything for the Stage 1 with 12 weeks of Chemo and survivability in the 90%'s. We met a parent from Alabama. Her 3 month old has Leukemia. They gave her 20% chance of living after diagnosis. She is 9 months now. The odds for her went to 40% after a bone marrow match was found. They came to Children's because the odds at Children's brings it to 75%. They live with the fear that we had for the first week or so all the time. They have left their jobs and live at the Ronald Mcdonald house down the street. They have been here since March. WE ARE LUCKY!
We are lucky that Children's is 9 mile away and they are top 10 in the country for Cancer.
We are lucky that Dr. Donna and Dr. Wu found the tumor on May 9th.
We are lucky they think they got it all and it is stage one.
We are lucky that our Chemo is only 12 weeks and not 3 years like some kids.
Children's has been incredible. We saw Minnie and Micky handing out stuffed animals yesterday. Too bad Ashley was still in recovery. They have new toys that have been donated, afghans that have been knitted, clowns, musicians, and volunteers. We had a volunteer come to our room bring us toys and and afghan and a latte. She had a bag. We asked her where she got it and she replied it was a gift to her and that she get so many compliments on it. It was one of Uncle Wayne's sparrow bags. I told her that was my Uncle Wayne Nakata and this is Ashley Nakata. She was excited.
Ashley just fell asleep in April's lap. I'm going too.
Tony
Wednesday, May 28, 2008
Sometimes its just hard
Ashley went in this morning for surgery to get what they call a Port-a-cath. It is a catheter that is under her skin and will be used for blood draws and delivering the chemo.
The last five days or so have been pretty great. She became herself again. Dancing, walking, watching Elmo, eating. Everyone is happy when she is happy.
We thought that we would not have to do an overnight here. Overnights are junk. No sleep, no privacy, vitals every couple of hours. Junk. We are here for an overnight though.
They are mixing her chemo right now and will start to deliver it at around 4:00 pm. They give you this book about taking care of a child going through chemo. They tell you that when you change her diapers you have to wear gloves because the urine and poop are so toxic. If she vomits you must wash it off as fast as you can. The sheets and clothing must be prewashed separately from the rest of the laundry. It is that toxic. They give you precautions if the vomit gets in your eyes or skin.
The thing that just breaks my heart is they are pumping this into her blood. When she wakes up from her anethesia she sounds like a walrus when she cries. It crushed me today. I know that we got over some big hurdles already but watching a 16 mos old go through this is tough on both of us.
Ashley seems to be doing ok considering. She gets on with her life without any anxiety. We are trying to also.
Tony
The last five days or so have been pretty great. She became herself again. Dancing, walking, watching Elmo, eating. Everyone is happy when she is happy.
We thought that we would not have to do an overnight here. Overnights are junk. No sleep, no privacy, vitals every couple of hours. Junk. We are here for an overnight though.
They are mixing her chemo right now and will start to deliver it at around 4:00 pm. They give you this book about taking care of a child going through chemo. They tell you that when you change her diapers you have to wear gloves because the urine and poop are so toxic. If she vomits you must wash it off as fast as you can. The sheets and clothing must be prewashed separately from the rest of the laundry. It is that toxic. They give you precautions if the vomit gets in your eyes or skin.
The thing that just breaks my heart is they are pumping this into her blood. When she wakes up from her anethesia she sounds like a walrus when she cries. It crushed me today. I know that we got over some big hurdles already but watching a 16 mos old go through this is tough on both of us.
Ashley seems to be doing ok considering. She gets on with her life without any anxiety. We are trying to also.
Tony
Tuesday, May 27, 2008
Kidney Test & Hearing Test
Ashley had a hearing test last Wednesday and today (Tue 5/27) we were at the Hospital again for a kidney test. Both tests are to establish a baseline as the chemo drugs can affect both. She'll be re-tested again before beginning her 3rd Chemo round.
Tomorrow (Wed 5/28) we go in for surgery at 7:45 am. They'll install a port-o-cath into her chest. After recovery (maybe an hour or two) they'll inject her first Chemo drug. Cystplatin (spelling??? I'll check that later). It looks like they might let us come home provided things go okay. Then we're back to Children's on Friday for two more chemo drugs.
We'll update more as we get it. Her spirits are good. Great actually. She loves to dance. We're trying to think of outdoor things she can do to replace her sandbox habit. That sandbox is forbidden this summer. If you have any safe non-toxic ideas, please share. - April
Tomorrow (Wed 5/28) we go in for surgery at 7:45 am. They'll install a port-o-cath into her chest. After recovery (maybe an hour or two) they'll inject her first Chemo drug. Cystplatin (spelling??? I'll check that later). It looks like they might let us come home provided things go okay. Then we're back to Children's on Friday for two more chemo drugs.
We'll update more as we get it. Her spirits are good. Great actually. She loves to dance. We're trying to think of outdoor things she can do to replace her sandbox habit. That sandbox is forbidden this summer. If you have any safe non-toxic ideas, please share. - April
Tuesday, May 20, 2008
Home at last!
Ashley on the Tuesday, May 20th. You'd never know by looking at her.I don't think the surgeon who cut out the tumor thought he would get the response that we gave him upon delivering the news. The news was the it is cancer. Hepatoblastoma. They cut it out with clean margins making it Stage 1. We cried.
I think it was going so well that we started to truly believe that it was benign and this wasn't really happening and that they'd cut it out and there would be no chemo and things would be normal again. I for some reason thought that we'd go home and recover for 3 or 4 weeks or so and things would be kind of the same. I guess not. It's probably why the doctors on the initial consultation don't tell you too much of what is going to happen because it would be too overwhelming.
We got our Chemo regiment for Ashley. There is no waiting. As the doctor said, this is "major stuff" and the line I can't get out of my head "the greatest risk to her life will be this thing coming back in the next year or two". Those are the thoughts I fight myself from thinking of. Sometimes those thought slip in anyways. We got home and we should be happy. I'm telling Grandma and Grandpa about the chemo and can barely keep it together. They were there to refocus me on the positives. Thanks mom and dad for everything.
So tomorrow we are right back there for a test on her hearing. This Chemo is tough the ears and the kidneys. They will test her hearing and kidneys to make sure they can take the Chemo. I don't know what they do if the tests aren't good. Then a days rest. Then and 8 hour IV drip kidney test on Thursday or Friday. Next week another surgery to insert a catheter into Ashley's little chest. They will deliver all the Chemo through that, take her blood draws from there. Another overnight at the hospital. They will also administer the first session of Chemo. She will have 3 more overnight stays at the hospital on 3 week intervals after that.
Ashley sat in her high chair tonight and ate, smiled and laughed. I haven't seen that in a couple of weeks. It was a great sight. Tony.
We're home and optomistic...
Well MOnday was tough but its Tues. afternoon and we're home. The IV was precautionary against dehydration because she would nurse but not swallow. The oxycocdone causes that. We reduced her meds and she began nursing fine. I was mentally a mess last night, I wanted to just leave the hospital... check out and go home with Ashley. I didn't but I did walk out of the building with her and my belongings.
They put more IV fluids in her Monday night and this morning she was nearly normal. The Pathology came back. Its Hepatoblastoma stage 1. They got it all out surgically but she needs chemo. She'll have surgery again next week where they'll install a port-o-cath for chemo treatments. Her first chemo treatment will be the day after surgery for the port-o-cath. We'll be admited for each Chemo round for about 24 hours. It takes about 6 hours just to deliver the meds.
If your child gets cancer, you hope for the best. You hope its Hepatablastoma, you hope the surgeons cut the thing out 100% and you hope for stage 1. That is what we have! We have hope and very high survival rates. Chemo will not kill her! Her greatest risk is re-infection of Hepatablastoma after Chemo is done. The first 1 year after Chemo is the most difficult for re-infection. After 1 year things drop down as far as likelyhood of recurrance.
We're home and I probably won't take Ashley anywhere for a while. No school next year. We're investing in auto-dispensing Purell for our house. We need lots of hand washing. Oh... She vomited on the way home from the Hospital today. We think she is just nausous from the drive and drugs. We'll keep an eye on her. We love her so much - April
Oh-- I forgot to mention. We finally know why she had high fevers, vomiting when we went to the ER last Thursday morning (the day before surgery). She has another Urnairy tract infection. That story and how I learned of the infection is what made me so ANGRY and SAD and I wanted to leave the Hosptal Monday night. All I have to say is ALWAYS follow up with your doc's. Even if they say they'll call you. You call them first and hound them.
They put more IV fluids in her Monday night and this morning she was nearly normal. The Pathology came back. Its Hepatoblastoma stage 1. They got it all out surgically but she needs chemo. She'll have surgery again next week where they'll install a port-o-cath for chemo treatments. Her first chemo treatment will be the day after surgery for the port-o-cath. We'll be admited for each Chemo round for about 24 hours. It takes about 6 hours just to deliver the meds.
If your child gets cancer, you hope for the best. You hope its Hepatablastoma, you hope the surgeons cut the thing out 100% and you hope for stage 1. That is what we have! We have hope and very high survival rates. Chemo will not kill her! Her greatest risk is re-infection of Hepatablastoma after Chemo is done. The first 1 year after Chemo is the most difficult for re-infection. After 1 year things drop down as far as likelyhood of recurrance.
We're home and I probably won't take Ashley anywhere for a while. No school next year. We're investing in auto-dispensing Purell for our house. We need lots of hand washing. Oh... She vomited on the way home from the Hospital today. We think she is just nausous from the drive and drugs. We'll keep an eye on her. We love her so much - April
Oh-- I forgot to mention. We finally know why she had high fevers, vomiting when we went to the ER last Thursday morning (the day before surgery). She has another Urnairy tract infection. That story and how I learned of the infection is what made me so ANGRY and SAD and I wanted to leave the Hosptal Monday night. All I have to say is ALWAYS follow up with your doc's. Even if they say they'll call you. You call them first and hound them.
Sunday, May 18, 2008
A little too fast
IV is going back in. Pain is coming back. No pee in the diaper. We need more time. Bummer.
As much as I want her home, I'm glad this is happening at Children's.
Tony
As much as I want her home, I'm glad this is happening at Children's.
Tony
Half Baby-Half AMAZING!
The size of the tumor was about the size of a grown mans fist. Unbelievable.
We first heard that we would be in the hospital for 2-4 weeks. I think that would of been the case if we need to transplant. Then they told us about a week for her procedure. Then after the surgery they said 5 days.
At about 5:00 tonight they disconnected everything. The epidural, the catheter, both IV's, yeah she had 2, the drain coming out under her ribs, the blood pressure monitor, the Oxygen sensor and the heart monitor. She has no fever either. She is on Oxycodone oral medication. She is not vomiting, and she is breastfeeding almost normally.
She pooped 2 times last night. That's big. I guess when they go in and move the liver around, they also move her bowels and intestines around. They get inflammed. That's why they don't want her to eat till they hear bowel sounds or farting. Never wished so hard for a fart in my life. She had bowel sounds her first night.
We sat outside on a patio with her in April's lap. It was wonderful and a beautiful night.
We saw one of the surgeons in the cafeteria and she said that kids process pain differently. They don't know why they don't need as many narcotics as adults.
If there is no fever tonight and no vomiting, we are probably going to go home tomorrow! AMAZING.
Tony.
We first heard that we would be in the hospital for 2-4 weeks. I think that would of been the case if we need to transplant. Then they told us about a week for her procedure. Then after the surgery they said 5 days.
At about 5:00 tonight they disconnected everything. The epidural, the catheter, both IV's, yeah she had 2, the drain coming out under her ribs, the blood pressure monitor, the Oxygen sensor and the heart monitor. She has no fever either. She is on Oxycodone oral medication. She is not vomiting, and she is breastfeeding almost normally.
She pooped 2 times last night. That's big. I guess when they go in and move the liver around, they also move her bowels and intestines around. They get inflammed. That's why they don't want her to eat till they hear bowel sounds or farting. Never wished so hard for a fart in my life. She had bowel sounds her first night.
We sat outside on a patio with her in April's lap. It was wonderful and a beautiful night.
We saw one of the surgeons in the cafeteria and she said that kids process pain differently. They don't know why they don't need as many narcotics as adults.
If there is no fever tonight and no vomiting, we are probably going to go home tomorrow! AMAZING.
Tony.
Saturday, May 17, 2008
The first 24 hours Post Operative...
Well its 9:39 am and I actually got to feed Ashley this morning. She was happy, lets hope she keeps it down. Tony slept with Ashley on her bed while I slept in the pull out - my first time ever NOT sleeping with her. I think she did better sleeping with Tony than with me. I got about 6 hours of sleep... I think Tony got 1 hour... maybe less.
Sometimes I look at her with all those cords going into her body and I think about my poor little baby. She shouldn't have to have this happen to her, she's so little. Then I wonder what life will be like. Will future tumors come up, will this spread, will I always be worried. Will life ever be normal. I try and take comfort in that life will be normal... a new normal. Life will simply be a new definition of normal. I'm always going to wonder if any tumors are in there again. I'm always going to wonder how long her life will be. I'm always going to wonder about the future. I guess that's part of my new normal. Then I wonder... Will she ever wear a bikini? HA HA!
What will chemo be like? She doens't have much hair to loose at least. Will she swell, will people be scared to look at her or will people have that sorrow look on their faces as they glance at her ravaged body. Okay... I'll get ahold of my self now... I'm trying to take this one day at a time. Sometimes its one minute at a time. -- April
Sometimes I look at her with all those cords going into her body and I think about my poor little baby. She shouldn't have to have this happen to her, she's so little. Then I wonder what life will be like. Will future tumors come up, will this spread, will I always be worried. Will life ever be normal. I try and take comfort in that life will be normal... a new normal. Life will simply be a new definition of normal. I'm always going to wonder if any tumors are in there again. I'm always going to wonder how long her life will be. I'm always going to wonder about the future. I guess that's part of my new normal. Then I wonder... Will she ever wear a bikini? HA HA!
What will chemo be like? She doens't have much hair to loose at least. Will she swell, will people be scared to look at her or will people have that sorrow look on their faces as they glance at her ravaged body. Okay... I'll get ahold of my self now... I'm trying to take this one day at a time. Sometimes its one minute at a time. -- April
Friday, May 16, 2008
"REMARKABLY FANTASTIC!"
Those were the words of the surgeon. All of the prayers and thoughts must have been heard.
It went better than we could of hoped for! Turns out that they did not have to cut off one of the two main blood supplys. After getting in there they were able to ultrasound the tumor and remove it only. They did so with what they called "good margins". What that means is that there is about a centimeter of good tissue that they cut out around the tumor. Or so they think. It won't be confirmed until pathology looks at it with results on Tuesday.
There are 4 stages of cancer. Stage 4 is the worst when it has travelled, then 3 that is where they see "visible hunks". Stage two" you think you get it all but margins aren't great or there is a part of thin margin. Stage 1: you get it all. He thinks it will be stage 1 or 2, but could very well be stage 1. The very best stage. I guess the operation went about as good as it could go. I guess there was very little blood loss, whick is unusual in a liver resection.
He told us that it would grow back in about 2-3 months!
When we first saw Ashley wake up. She sat up and cried mama. She can't eat anything until her stomach "wakes up". She wants to eat badly and does the milk sign. She got mad and flailed her legs. All of these are good signs. She stood up later and tried to walk to April. She is doing pretty awesome, groggy but pretty good.
She has 2 IV's, a cathater, an epidural, and a drain coming out from under her rib cage. Gradually these will be taken out.
Sorry it took so long to update. By the time we got our room and ate it was getting pretty late.
Mama and Ashley are sleeping right now.
I know there is still more to go, but for right now I'm one happy dude!
Tony
It went better than we could of hoped for! Turns out that they did not have to cut off one of the two main blood supplys. After getting in there they were able to ultrasound the tumor and remove it only. They did so with what they called "good margins". What that means is that there is about a centimeter of good tissue that they cut out around the tumor. Or so they think. It won't be confirmed until pathology looks at it with results on Tuesday.
There are 4 stages of cancer. Stage 4 is the worst when it has travelled, then 3 that is where they see "visible hunks". Stage two" you think you get it all but margins aren't great or there is a part of thin margin. Stage 1: you get it all. He thinks it will be stage 1 or 2, but could very well be stage 1. The very best stage. I guess the operation went about as good as it could go. I guess there was very little blood loss, whick is unusual in a liver resection.
He told us that it would grow back in about 2-3 months!
When we first saw Ashley wake up. She sat up and cried mama. She can't eat anything until her stomach "wakes up". She wants to eat badly and does the milk sign. She got mad and flailed her legs. All of these are good signs. She stood up later and tried to walk to April. She is doing pretty awesome, groggy but pretty good.
She has 2 IV's, a cathater, an epidural, and a drain coming out from under her rib cage. Gradually these will be taken out.
Sorry it took so long to update. By the time we got our room and ate it was getting pretty late.
Mama and Ashley are sleeping right now.
I know there is still more to go, but for right now I'm one happy dude!
Tony
Surgery Schedule
Check in at 9:00. Might have to get some bloodwork done ahead of time.
Then go to Operating Room. Nurses will talk with us as well as the anesthesiologist.
Procedure starts at 11:15. They will give us a pager. It will take about 4 hours (deep breath).
The doctors meet us after to tell us how great it went.
We go to recovery room and watch her wake up.
Ashley's fever seemed to subside last night. She isn't moaning this morning. I think that is a good sign of things to come. I'm scared and nervous, but I'm optimistic too.
Our pediatrician called us yesterday, Joyce. She told us that we caught this thing early.
One of the other doctors told us that in only 25% of the tumor removals do they go in without chemo or a biopsy. Those are the best situations.
I'm hanging on to every one of those words right now.
Tony
Then go to Operating Room. Nurses will talk with us as well as the anesthesiologist.
Procedure starts at 11:15. They will give us a pager. It will take about 4 hours (deep breath).
The doctors meet us after to tell us how great it went.
We go to recovery room and watch her wake up.
Ashley's fever seemed to subside last night. She isn't moaning this morning. I think that is a good sign of things to come. I'm scared and nervous, but I'm optimistic too.
Our pediatrician called us yesterday, Joyce. She told us that we caught this thing early.
One of the other doctors told us that in only 25% of the tumor removals do they go in without chemo or a biopsy. Those are the best situations.
I'm hanging on to every one of those words right now.
Tony
Thursday, May 15, 2008
Surgery tomorrow, the next big hurdle.
Looks like we are going to be checking in at 10:00 for the surgery. The head surgeon told us to get there at 9:00 though.
The last 24 hours have been rough on Ashley. She seems so lethargic, just sits there in April's lap. In some ways I will be relieved to have them take her away. In other ways I don't want to see them take her away.
I'm trying to think of something to do while we wait for the surgery. Something to keep our minds off of the bad things. I've been reading the the Lance Armstrong story at livestrong.org for some motivation.
I'm just trying to picture her after the surgery, doing her little"Hot-dog Dance" from the Mickey Mouse Clubhouse. The doctors coming in and telling me how great it went. I hope that is the next post on this site.
One positive that my friend Greg pointed out. I've never experienced love, support, prayers like this before. I will never forget it. It's pretty cool.
Trying to LIVE STRONG. Tony
The last 24 hours have been rough on Ashley. She seems so lethargic, just sits there in April's lap. In some ways I will be relieved to have them take her away. In other ways I don't want to see them take her away.
I'm trying to think of something to do while we wait for the surgery. Something to keep our minds off of the bad things. I've been reading the the Lance Armstrong story at livestrong.org for some motivation.
I'm just trying to picture her after the surgery, doing her little"Hot-dog Dance" from the Mickey Mouse Clubhouse. The doctors coming in and telling me how great it went. I hope that is the next post on this site.
One positive that my friend Greg pointed out. I've never experienced love, support, prayers like this before. I will never forget it. It's pretty cool.
Trying to LIVE STRONG. Tony
Wednesday evening... We went to the ER at 3 am
Wednesday evening Ashley developed a fever. She hadn't vomited for 12 hours but she was feverish. We called the onconogist/hemotologist. They said basically not to give her any tylenol/ibprophen because it can cause bleeding issues during surgery. This was at 9 pm. By 11 pm her fever was around 99. We called the doctor again. They don't get concerned unless the fever is in the 100's. If we're concerned they told us to take her to our Ped. By 1 am her fever was around 100.7 and she would moan each time she'd wake in her sleep. She's twist her body into the "butt up" position on the bed and just moan. Her fever would spike then fall. She was hydrated as we could see tears. Her breathing seemed labored i.e. short, shallow. We called the Doc again. "Bring her into Children's Hospital ER".
We called Grandma and Grandpa at 2 am and they came over to watch Whitney as we headed to the ER. We had so many tests done. Chest X-ray, another IV so they could get blood work, a booger smear from her nose, Blood pressure. Of course before we could begin the blood work, we had to get a sick, groggy often awake but really tired and sleepy baby to drink some "valium" type of medication. The first syringe... she spit the entire thing out. 30 minutes and another syringe later she finally got the medicine in her and went to sleep. Whew! Her fever was normal upon checking into the ER but it would spike. By 8 am it was 102.
Tony and I were up all night. They found no chest conjestion which is good because this means they probably wouldn't postpone her surgery on Friday. Her blood work indicated her white blood cell count had doubled within the last two days so she's fighting off something. They don't know what it is. We're still waiting for the "booger smear" results.
We left the ER around 9:30 am and are home. We've been sleeping. I just woke up to update the blog. Ashley is still warm but they allowed us to give her Fever All. Its basically Tylenol and given in the butt. NICE Visual Eh! I"ll update more as we get it. We just need her to be tough and pray the surgery isn't cancelled. Then again, the doctors know best and if they believe the surgery should be cancelled until she's feeling better, I guess that's the right call. Right now we're on a wait and see basis. -- April
We called Grandma and Grandpa at 2 am and they came over to watch Whitney as we headed to the ER. We had so many tests done. Chest X-ray, another IV so they could get blood work, a booger smear from her nose, Blood pressure. Of course before we could begin the blood work, we had to get a sick, groggy often awake but really tired and sleepy baby to drink some "valium" type of medication. The first syringe... she spit the entire thing out. 30 minutes and another syringe later she finally got the medicine in her and went to sleep. Whew! Her fever was normal upon checking into the ER but it would spike. By 8 am it was 102.
Tony and I were up all night. They found no chest conjestion which is good because this means they probably wouldn't postpone her surgery on Friday. Her blood work indicated her white blood cell count had doubled within the last two days so she's fighting off something. They don't know what it is. We're still waiting for the "booger smear" results.
We left the ER around 9:30 am and are home. We've been sleeping. I just woke up to update the blog. Ashley is still warm but they allowed us to give her Fever All. Its basically Tylenol and given in the butt. NICE Visual Eh! I"ll update more as we get it. We just need her to be tough and pray the surgery isn't cancelled. Then again, the doctors know best and if they believe the surgery should be cancelled until she's feeling better, I guess that's the right call. Right now we're on a wait and see basis. -- April
Wednesday, May 14, 2008
Wednesday. Two days before surgery...
Today was a... hum... I don't know kind of day. Ashley woke so early 5 am. She went to bed around 10:30. Poor baby must be tired. She vomited today around 9 am. A lot of vomit. A lot of beef jerkey. She LOVES Tony's homemade beef jerkey. The vomit wasn't green. She's so tired today. Numerous naps. She is only awake in about 2-3 hour stretches. She has been nursing in 30 minute increments. I'm drained. Drained of milk, drained of energy, just drained. I'm sleeping well but I'm drained. We called the oncologist today and again, they're not concerned about the vomiting unless its green. Whitney has been a CHAMP at school. She goes all by herself now and doesn't need mommy or daddy there. This is a big help for us.
I don't want to feed Ashley anything but water, oyster crackers and breastmilk. This seems to help her keep her food down. She did eat some Hershey's chocolate this afternoon when Tony stoked up an outdoor fire in the firepit and Whitney made smores. Ashley wouldn't eat the graham cracker... she gave it to the dog. Ashley wouldn't eat the marshmellow... she gave it to the dog. Ashley ate the chocolate. HA! Too bad Musashi. No chocolate for you. It seems as if Ashley is keeping the chocolate down. She's asleep right now. I don't know when she'll wake or when she'll be down for the night. I'm just going with the flow. For those of you who know me... going with the flow is not my style. I like to have a plan. Tony seems to be doing okay today. We find it hard to hold back tears sometimes. I try not to let it get the best of me. Thats all for now from me. Thank you to all of you for your kind thoughts and help. Bob and Sally Nakata... your the best grandparents in the world! You make us food, you mow our lawn, you clean our kitchen, you're there in the middle of the night if we need you. We so appreciate you.
Crystal Thomas, - your help seems like a full time job. I don't know where you get the time and energy to coordinate so many things for us. Thanks so much.
Remember to kiss your kids good night and tell them how much you love them. Squeeze them TIGHT! -- April
I don't want to feed Ashley anything but water, oyster crackers and breastmilk. This seems to help her keep her food down. She did eat some Hershey's chocolate this afternoon when Tony stoked up an outdoor fire in the firepit and Whitney made smores. Ashley wouldn't eat the graham cracker... she gave it to the dog. Ashley wouldn't eat the marshmellow... she gave it to the dog. Ashley ate the chocolate. HA! Too bad Musashi. No chocolate for you. It seems as if Ashley is keeping the chocolate down. She's asleep right now. I don't know when she'll wake or when she'll be down for the night. I'm just going with the flow. For those of you who know me... going with the flow is not my style. I like to have a plan. Tony seems to be doing okay today. We find it hard to hold back tears sometimes. I try not to let it get the best of me. Thats all for now from me. Thank you to all of you for your kind thoughts and help. Bob and Sally Nakata... your the best grandparents in the world! You make us food, you mow our lawn, you clean our kitchen, you're there in the middle of the night if we need you. We so appreciate you.
Crystal Thomas, - your help seems like a full time job. I don't know where you get the time and energy to coordinate so many things for us. Thanks so much.
Remember to kiss your kids good night and tell them how much you love them. Squeeze them TIGHT! -- April
Tuesday, May 13, 2008
Just okay today...
Today was just an okay day. We got good news in that Ashley's bloodwork indicated an elevated alpha protein indicative of "hepatomablastoma" cancer... (again if it is cancer as only the biopsy pathology results provide certainty).
Ashley has had several vommiting episodes today and seems very tired. She seems to want Mommy a lot. We've made 2 calls to the Oncologist/hemotologist and they begin to get concerned if the vomiting turns green. For now my gut thinks her vomiting is unrelated to the tumor. Rather that damn tumor is so big (6 cm or 3 in.) it pushes against her stomach. When she's lifted or any weight is pressed upon her belly in just the right place, extra pressure causes her to vomit. And if she's overeating (which she does each time she nurses in her sleep) it certainly causes some vomit. But its NOT GREEN! - A good sign.
The surgeon called tonight and we're scheduled for Surgery Friday morning around 11 am. We'll be admitted to Childrens.
We are so moved by the outpouring of support for our family. So many of you are organizing food, childcare and just good thoughts! We need this so much and it means so much to hear your blog posts. Keep posting. We'll keep posting too. We love our baby so much.
April
Ashley has had several vommiting episodes today and seems very tired. She seems to want Mommy a lot. We've made 2 calls to the Oncologist/hemotologist and they begin to get concerned if the vomiting turns green. For now my gut thinks her vomiting is unrelated to the tumor. Rather that damn tumor is so big (6 cm or 3 in.) it pushes against her stomach. When she's lifted or any weight is pressed upon her belly in just the right place, extra pressure causes her to vomit. And if she's overeating (which she does each time she nurses in her sleep) it certainly causes some vomit. But its NOT GREEN! - A good sign.
The surgeon called tonight and we're scheduled for Surgery Friday morning around 11 am. We'll be admitted to Childrens.
We are so moved by the outpouring of support for our family. So many of you are organizing food, childcare and just good thoughts! We need this so much and it means so much to hear your blog posts. Keep posting. We'll keep posting too. We love our baby so much.
April
The first big hurdle
Yesterday was a pretty good day considering we have a baby with cancer. Friday and Saturday we were a mess. Sunday just a little bit better.
My biggest fears going into the day Monday were the cat scan procedure itself and putting Ashley under. I was worried about some allergic reaction to the anesthesia.
Then the big one, that they would find more cancer throughout her body and not be able to do anything about it. I don’t wish that thought on anybody.
Watching her go under the anesthesia was pretty emotional. April was holding the mask of nitrous over her face while she cried and struggled. Thank god that lasted only 15 seconds or so. Then the nurses told us to kiss her and leave the room.
I was so tense and anxious when we where waiting for the results. The results were about all we could hope for!
The cancer was not in any other part of her body, not in the blood, not in the kidney, nowhere else. Thank you God for that one!
At first, they told us that the tumor was too big to cut out right now. That we would have to do chemo first, shrink the tumor, then get it.
Then the surgeon who would actually be doing the surgery told us that he thinks we can get it on the first try. We won’t even have to do a biopsy, because either way, malignant or benign we would have to take it out.
I guess the liver has two main blood supplies and two main drains. The tumor is on the right side. They will cut off the blood supply on the right side, and watch it turn blue, like putting a rubber band on your finger. Then they will remove the part that is blue and cutoff the drain. The left side will grow into the right side to compensate. We take the right side of the liver and the whole tumor with it. That sounded like good plan to me! Surgery will probably be later this week. She will be in the hospital for a week if everything goes right.
We still have other big hurdles to get over but yesterday was a pretty big one. The next one is the surgery.
I hated to see Ashley miserable when she would get a new tooth. Now they are going to cut open her stomach, almost from one side to the other. I worry about how she will take the pain after the surgery. But at least she will be alive! I can deal with that kind of worry.
One last thing, I can’t tell you how much you start to appreciate things after a few dark days like this.
I want to thank everybody at Wellsfargo for the messages and e-mail’s, all of the playgroup families, you guys are amazing, and all of the friends and family that put us in their thoughts. I think all of the prayers are starting to be answered. I hope it continues. Thanks to Anita and Marion for distributing this for me.
In the middle of the night, when it’s rough and I don’t want to wake up April, I read these things and it helps. It makes you feel like you’re not alone in all of this.
Tony
My biggest fears going into the day Monday were the cat scan procedure itself and putting Ashley under. I was worried about some allergic reaction to the anesthesia.
Then the big one, that they would find more cancer throughout her body and not be able to do anything about it. I don’t wish that thought on anybody.
Watching her go under the anesthesia was pretty emotional. April was holding the mask of nitrous over her face while she cried and struggled. Thank god that lasted only 15 seconds or so. Then the nurses told us to kiss her and leave the room.
I was so tense and anxious when we where waiting for the results. The results were about all we could hope for!
The cancer was not in any other part of her body, not in the blood, not in the kidney, nowhere else. Thank you God for that one!
At first, they told us that the tumor was too big to cut out right now. That we would have to do chemo first, shrink the tumor, then get it.
Then the surgeon who would actually be doing the surgery told us that he thinks we can get it on the first try. We won’t even have to do a biopsy, because either way, malignant or benign we would have to take it out.
I guess the liver has two main blood supplies and two main drains. The tumor is on the right side. They will cut off the blood supply on the right side, and watch it turn blue, like putting a rubber band on your finger. Then they will remove the part that is blue and cutoff the drain. The left side will grow into the right side to compensate. We take the right side of the liver and the whole tumor with it. That sounded like good plan to me! Surgery will probably be later this week. She will be in the hospital for a week if everything goes right.
We still have other big hurdles to get over but yesterday was a pretty big one. The next one is the surgery.
I hated to see Ashley miserable when she would get a new tooth. Now they are going to cut open her stomach, almost from one side to the other. I worry about how she will take the pain after the surgery. But at least she will be alive! I can deal with that kind of worry.
One last thing, I can’t tell you how much you start to appreciate things after a few dark days like this.
I want to thank everybody at Wellsfargo for the messages and e-mail’s, all of the playgroup families, you guys are amazing, and all of the friends and family that put us in their thoughts. I think all of the prayers are starting to be answered. I hope it continues. Thanks to Anita and Marion for distributing this for me.
In the middle of the night, when it’s rough and I don’t want to wake up April, I read these things and it helps. It makes you feel like you’re not alone in all of this.
Tony
Monday, May 12, 2008
Cat Scan Day
Today was a good day. I won't bore you with the details but will say that after spending 8 straight hours at Children's Hospital... it was a very good day. Ashley's cat scan revealed the tumor has not spread through out her body. Its in her liver only. We don't have all the blood work back yet so there is a chance it could be in her blood but its not in her kidneys. Her preliminary bloodwork looked normal but we're waiting for a couple more results. Yahoo! Here's the bottom line. NO BIOPSY! Yahoo! It turns out that although the tumor is rather large, the surgeons are confident they can extract the entire tumor sometime this week. WHEW! This news surpassed our expectations. We thought there would first be a biopsy, then determine the best extraction method. We were also told that the tumor might be too large and they may do 2 chemo rounds first, then another CT scan, then a biopsy. We're very happy this is not the case. And there is a chance its not cancer, unlikely but a slight chance. We should have more blood work results tomorrow. Once they extract the turmor it will take a couple days for the lab to analyze it. Once analyzed, then they'll determine what/when chemo to do. She'll probably be in the hospital for a week and will have a large V shaped incision covering her entire lower abdominal cavity. (I'm going to take LOTS of photo's of her tummy before surgery so she'll know what it use to look like.)
If you want details of our day... here they are. 9:30 arrive at childrens. 11 finally in to begin the CT process, but were disapointed that we were not better informed of details. Ashley had to drink 2-3 ozs of this fluid and then wait two more hours before they would sedate her for a CT scan. VERY FRUSTRATING! I hadn't fed her since 5:12 am and she was really hungry, really fussy and really tired. Finally around 2 pm she was sedated and I had the unusual experience of putting my child to sleep by holding a mask of gas to her face. It took about 15 seconds. I lay her down on the table and we kissed her and said "you'll be fine". This was the most emotional part of the day for me. Just seeing all the medical personnel in the room and that HUGE tire shaped machine was very intimidating. The CT was FAST. She was back in the room by 2:20 and at 2:30 woke up. She had leads on her chest, an SpO2 sensor, NIBP and an IV in her left hand. Once she woke the nurses grabbed her quickly off the crib and pulled off the monitoring gear. I was finally able to deflate my now inflamed to a size ZZZ breasts. Yahoo! INSTANT relief. She fell asleep again and stayed asleep until 5:30. WHICH WAS AWESOME! Because numerous surgeons and oncology personnell had to examine her and take more blood from the IV still in her hand. We were able to get such a good exam and had such an easy time talking with the Doc's due to her slumber. Okay. Today was a good day for me. I think for Tony too. I'll sign off now and update you more when I get more. Thanks for all your well wishes, they're working! -- April
If you want details of our day... here they are. 9:30 arrive at childrens. 11 finally in to begin the CT process, but were disapointed that we were not better informed of details. Ashley had to drink 2-3 ozs of this fluid and then wait two more hours before they would sedate her for a CT scan. VERY FRUSTRATING! I hadn't fed her since 5:12 am and she was really hungry, really fussy and really tired. Finally around 2 pm she was sedated and I had the unusual experience of putting my child to sleep by holding a mask of gas to her face. It took about 15 seconds. I lay her down on the table and we kissed her and said "you'll be fine". This was the most emotional part of the day for me. Just seeing all the medical personnel in the room and that HUGE tire shaped machine was very intimidating. The CT was FAST. She was back in the room by 2:20 and at 2:30 woke up. She had leads on her chest, an SpO2 sensor, NIBP and an IV in her left hand. Once she woke the nurses grabbed her quickly off the crib and pulled off the monitoring gear. I was finally able to deflate my now inflamed to a size ZZZ breasts. Yahoo! INSTANT relief. She fell asleep again and stayed asleep until 5:30. WHICH WAS AWESOME! Because numerous surgeons and oncology personnell had to examine her and take more blood from the IV still in her hand. We were able to get such a good exam and had such an easy time talking with the Doc's due to her slumber. Okay. Today was a good day for me. I think for Tony too. I'll sign off now and update you more when I get more. Thanks for all your well wishes, they're working! -- April
Sunday, May 11, 2008
Sunday... Mothers day
Today is mothers day. We had a good day. We took the girls to the Children's Museum in Everett and Grandpa came over and cut our grass. IT LOOKS GREAT! Thanks Grandpa. We ate a feast for dinner. My mom's group friends brought over a huge load of food and we ate like kings. It wasn't low carb. Today was a good day. We're getting our minds wrapped around this thing and we're feeling now we are prepared to take the next medical steps.
Many of you are asking how to help. We do want your help. We've had flowers delivered, meals delivered, emails of kind thoughts and support. All of this helps. For now we're taking things one day at a time. We will need more help we just aren't sure what yet. When we know what we need we'll post and inform you. I know we'll need play dates for Whitney, more food, toys to play with when (if) she's admitted for surgery as we'll be there for potentially a month. Then when/if Chemo starts, we'll have more needs. Maybe more of the same needs maybe different needs.
For now, know that your kind words and support are very much appreciated. We feel the more people who direct positive energy our way, the better our family will be.
Monday is a big day. CT scan sometime. We'll update the blog as soon as we have new information. Please kiss your kids and hug them tightly for us. You can never say I love you enough times.
Many of you are asking how to help. We do want your help. We've had flowers delivered, meals delivered, emails of kind thoughts and support. All of this helps. For now we're taking things one day at a time. We will need more help we just aren't sure what yet. When we know what we need we'll post and inform you. I know we'll need play dates for Whitney, more food, toys to play with when (if) she's admitted for surgery as we'll be there for potentially a month. Then when/if Chemo starts, we'll have more needs. Maybe more of the same needs maybe different needs.
For now, know that your kind words and support are very much appreciated. We feel the more people who direct positive energy our way, the better our family will be.
Monday is a big day. CT scan sometime. We'll update the blog as soon as we have new information. Please kiss your kids and hug them tightly for us. You can never say I love you enough times.
Saturday, May 10, 2008
The beginning
Ashley went in yesterday for a routine 15 month check up and it was anything but routine. We were sent to Children's Hospital where they did an immediate ultrasound on her liver as our Ped thought it seemed enlarged. The ultrasound showed a 6 cm mass in her liver. After several medical personnel communicated with us; they were going to admit us that night, however when they couldn't gather the necessary personnel together (it was late on a Fri. night) we were advised this could wait till Monday for next steps. This is what the doctors told us:
She has a mass in her liver. Its 6 cm and its "well margionalized". We won't know exactly what it is until a biopsy in done. Before a biopsy we need to do a CT scan. This will show if its spread and its exact location and what type of biopsy to do. Once the CT is complete, we'll review it and determine what type of biopsy to do. The biopsy probably won't be scheduled until 2 days after the CT exam. Once the biopsy is done, it will take about two days for those results. If it is what they think it is... "hepatoblastoma", its a very treatable cancer. If your going to get cancer, this is the kind you want. And its in a portion of the liver that is easily accessable for removal. Based upon the u/s results this is what it looks like but the biopsy will prove it. If the cancer is contained in the liver and they can remove it completely, the success rates are very high. We were originally quoted better than 90%. Then there will be a few months of chemo. I don't remember what kind of Chemo but they will need to put an IV in her larger neck or chest veins and the IV will stay there for a while to reduce the number on "pokes".
Okay... now its Saturday. Day 2 of our knowledge base. We spent the day in a daze after little sleep. Went to Grandma's and Grandpa's. Now we're home and have had several conversations with medical personnel through out the day. A dear friend of Tony's (Greg) is a Doctor and cancer survivor. He shed some light on our situation and we're feeling better. We also spoke with Abe Fong the on-call Oncologist/hemotologist at Children's. He also helped calm us. Thats all I have for now. I'm tired and need to get my mind off of things.
She has a mass in her liver. Its 6 cm and its "well margionalized". We won't know exactly what it is until a biopsy in done. Before a biopsy we need to do a CT scan. This will show if its spread and its exact location and what type of biopsy to do. Once the CT is complete, we'll review it and determine what type of biopsy to do. The biopsy probably won't be scheduled until 2 days after the CT exam. Once the biopsy is done, it will take about two days for those results. If it is what they think it is... "hepatoblastoma", its a very treatable cancer. If your going to get cancer, this is the kind you want. And its in a portion of the liver that is easily accessable for removal. Based upon the u/s results this is what it looks like but the biopsy will prove it. If the cancer is contained in the liver and they can remove it completely, the success rates are very high. We were originally quoted better than 90%. Then there will be a few months of chemo. I don't remember what kind of Chemo but they will need to put an IV in her larger neck or chest veins and the IV will stay there for a while to reduce the number on "pokes".
Okay... now its Saturday. Day 2 of our knowledge base. We spent the day in a daze after little sleep. Went to Grandma's and Grandpa's. Now we're home and have had several conversations with medical personnel through out the day. A dear friend of Tony's (Greg) is a Doctor and cancer survivor. He shed some light on our situation and we're feeling better. We also spoke with Abe Fong the on-call Oncologist/hemotologist at Children's. He also helped calm us. Thats all I have for now. I'm tired and need to get my mind off of things.
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