As many of you close to me know, I am part of an on-line support group of care givers of kids with ALL - Madelyn's specific type of Leukemia. We all email information, questions, happenings, triumphs and disappointments. Back in January I posted that a 14 year old girl Leann, after a heroic battle, had passed away. I was so devastated for this family. I had been closely reading and following Leann's story for months.
http://madelynjill.blogspot.com/2012/01/jan-18.html
Well, today I found out Leann and her mother Karen were a fake. This girl never existed. It was this woman's way of getting attention. It is a mental disorder called Munchausen By Internet.
I am speechless.
Friday, April 27, 2012
Thursday, April 26, 2012
April 23
The big, BIG news first: MADELYN STARTING RIDING HER BIKE! She went straight from scooting to riding (no training wheel please). I can't tell you have unbelievably excited and happy this made Peter and I. I can't wait for family bike trips! Sophia, I'm sure, won't be too far off - she has to keep up with sis for peat's sake! Madelyn is stinkin' adorable riding that thing. Especially when she rides it to dance class complete with tutu.
If you keep up with news in Seattle you probably heard the story about the "blue trees" in downtown Seattle by Australian artist Kon Dimopoulos. He painted the trees around Westlake a bright blue (not harmful, water-based paint). It was pretty cool. Madelyn and I happened to stay in a hotel close by after her ER run last week. We were walking by and she went right up to the artists helping and said "what are you guys doing?" They told her and then she said "can I help?" So in true Madelyn fashion she was part of an international art project. By the time we arrived back at our hotel she was covered in blue :) The artist and his wife sent Madelyn and Sophia a sweet note and package (with two stuffed Australian Koala bears!) saying thank you for her help.
http://www.kondimopoulos.com/thebluetrees/westlakeparkseattle/
http://seattletimes.nwsource.com/html/localnews/2017895829_bluetrees.html
Madelyn had her appointment at Seattle Children's on Monday... i.e. she feels pretty yucky right now.. but that girl just keeps on going! Her energy is low, she feels week, she is in pain and nauseated. She has needed a nap each morning, but has made it to school around 9:30am or 10:00am. Madelyn's school is a small, busy, bustling place. There is always a lot of wonderful activity going on. But if Miss Madelyn is tired well... she doesn't care one bit. She pulls out a blanket and pillow, finds a corner and settles down for a power nap. All of her buddies know she has a week of "not feelin' too good" and then she we will be back to being Madelyn.
Her counts this week:
Hem 37.1 Plat 258 WBC 2.5 ANC 1362
They are pushing the chemo again- increasing her daily 6-mecaptopurine. She will also start on a medication to help with neuropathy. Unfortunately, it is starting to rear it's ugly head again. She has been having ankle and foot pain and complaining of a feeling "pins and needles". She has also begun falling more than is normal. She asked me to make sure and talk to the doctor about it. So I made a note on my monthly list of questions and then asked Madelyn to talk discuss it without any Mommy involvement. It was a pretty cute conversation and Dr. Jessica was impressed with how well and coherently Madelyn spoke about how it felt.
Other than that she is super busy being six years old right now. Lots of tutu wearing, dance class going, horse drawing, swimming (like a fish) and getting very close to that "click" moment when reading starts to make sense. (I am been feeling the need to brush up on all those vowel rules. It's really hard to help her with reading when I don't even know why we say it like that!) She is getting excited to start softball for the first time. She got a glove and bat with Grandpa Jim last week. And man, of man, does that girl know how to hit and throw the ball!
Peter and I are beginning to think about the end. I know, I know... it is still 10 months away. But that isn't a year anymore! That is only 10 more "bad" weeks. I hope my heart will be able to take going off chemo. The waiting, the watching, the hoping for no relapse.
If you keep up with news in Seattle you probably heard the story about the "blue trees" in downtown Seattle by Australian artist Kon Dimopoulos. He painted the trees around Westlake a bright blue (not harmful, water-based paint). It was pretty cool. Madelyn and I happened to stay in a hotel close by after her ER run last week. We were walking by and she went right up to the artists helping and said "what are you guys doing?" They told her and then she said "can I help?" So in true Madelyn fashion she was part of an international art project. By the time we arrived back at our hotel she was covered in blue :) The artist and his wife sent Madelyn and Sophia a sweet note and package (with two stuffed Australian Koala bears!) saying thank you for her help.
http://www.kondimopoulos.com/thebluetrees/westlakeparkseattle/
http://seattletimes.nwsource.com/html/localnews/2017895829_bluetrees.html
Madelyn had her appointment at Seattle Children's on Monday... i.e. she feels pretty yucky right now.. but that girl just keeps on going! Her energy is low, she feels week, she is in pain and nauseated. She has needed a nap each morning, but has made it to school around 9:30am or 10:00am. Madelyn's school is a small, busy, bustling place. There is always a lot of wonderful activity going on. But if Miss Madelyn is tired well... she doesn't care one bit. She pulls out a blanket and pillow, finds a corner and settles down for a power nap. All of her buddies know she has a week of "not feelin' too good" and then she we will be back to being Madelyn.
Her counts this week:
Hem 37.1 Plat 258 WBC 2.5 ANC 1362
They are pushing the chemo again- increasing her daily 6-mecaptopurine. She will also start on a medication to help with neuropathy. Unfortunately, it is starting to rear it's ugly head again. She has been having ankle and foot pain and complaining of a feeling "pins and needles". She has also begun falling more than is normal. She asked me to make sure and talk to the doctor about it. So I made a note on my monthly list of questions and then asked Madelyn to talk discuss it without any Mommy involvement. It was a pretty cute conversation and Dr. Jessica was impressed with how well and coherently Madelyn spoke about how it felt.
Other than that she is super busy being six years old right now. Lots of tutu wearing, dance class going, horse drawing, swimming (like a fish) and getting very close to that "click" moment when reading starts to make sense. (I am been feeling the need to brush up on all those vowel rules. It's really hard to help her with reading when I don't even know why we say it like that!) She is getting excited to start softball for the first time. She got a glove and bat with Grandpa Jim last week. And man, of man, does that girl know how to hit and throw the ball!
Peter and I are beginning to think about the end. I know, I know... it is still 10 months away. But that isn't a year anymore! That is only 10 more "bad" weeks. I hope my heart will be able to take going off chemo. The waiting, the watching, the hoping for no relapse.
Here are some recent photos of my beautiful, strong, spunky, super fantastic, sparkolicious girls...
Wednesday, April 18, 2012
little Mia
Please send love and light
into your world today.
There is a Mama and a Daddy
and a little brother waking up this morning to experience day 2 without their
precious baby girl and their forever buddy.
It is a devastation I can not understand. And it is tearing me up inside. I can’t stop crying. This could easily be our reality or our
future. Little Mia fought from age 2
until age 5 and now her family will fight to try and continue to live without her.
Please send strength to our
oncologist, Dr Jessica Parker, and our wonderful team at Seattle Children’s. They have been fighting for Mia too. Pediatric Cancer includes days like these,
but I am sure it is never easy. I’m sure
it always touches a raw place inside.
Rest in peace little Mia.
Thursday, April 12, 2012
more ER runs
Quick update today...
We had another ER run over the weekend. Poor honey. By 5pm on Saturday night before Easter Madelyn was screaming from pain in her ear. It was exactly the same as three months ago coming home from Leavenworth. I called the on-call Oncologist at Children's and they instructed us to go to the ER at Island Hospital. Phew. We were in and out 1.5 hours! Yup, ear infection! Antibiotics were started by 8pm. She was in bed by 9pm.
She is feeling great now and headed back to school on Tuesday.
It was a hard decision to send her back to school and come off Lock Down. The Whooping Cough outbreak is still at epidemic levels in WA State, but the few cases loosely associated with the school were two weeks ago. And we are all going stir crazy. Madelyn and Sophia have both been spilling over in smiles and energy since going back. We will still try and stay away from "people" places... but back to school is good for us all...
We went to Island Hospital on Monday for counts. She is back to HER normal counts - the right level of immune system suppression.
Hem 34 Plat 338 WBC 2.8 ANC 1397
ALT (liver toxicity) is on the rise again... we will continue to monitor that.
Our next appointment is on April 23. I hope I have nothing to report until then!
We had another ER run over the weekend. Poor honey. By 5pm on Saturday night before Easter Madelyn was screaming from pain in her ear. It was exactly the same as three months ago coming home from Leavenworth. I called the on-call Oncologist at Children's and they instructed us to go to the ER at Island Hospital. Phew. We were in and out 1.5 hours! Yup, ear infection! Antibiotics were started by 8pm. She was in bed by 9pm.
She is feeling great now and headed back to school on Tuesday.
It was a hard decision to send her back to school and come off Lock Down. The Whooping Cough outbreak is still at epidemic levels in WA State, but the few cases loosely associated with the school were two weeks ago. And we are all going stir crazy. Madelyn and Sophia have both been spilling over in smiles and energy since going back. We will still try and stay away from "people" places... but back to school is good for us all...
We went to Island Hospital on Monday for counts. She is back to HER normal counts - the right level of immune system suppression.
Hem 34 Plat 338 WBC 2.8 ANC 1397
ALT (liver toxicity) is on the rise again... we will continue to monitor that.
Our next appointment is on April 23. I hope I have nothing to report until then!
Tuesday, April 3, 2012
April 3 - bag was needed
Unfortunately, that packed bag was needed. Darn it!
Sophia's fever was gone and she was feeling much better by Friday, however, Madelyn was noticeably sick. A fever of 101.5 presented itself Sunday morning so it was off to Seattle Children's ER for MJ and I. (As soon as Madelyn gets a fever of 101 we have to head to the hospital).
We were in the ER from about 1:00pm until about 6:00pm. They accessed her port, pulled blood for CBCs and blood cultures and two different instruments were put up her nose for viral tests. We are talking wayyyy up her nose, poor honey. Those tubes and swabs looked like they could have reached her stomach.
Her CBC came back with an ANC of around 7,000 and WBC of 6.2! Her little body was obviously fighting something big time. I had never seen these numbers from Madelyn before and they concerned me so I asked them to talk to Oncology. Poor Madelyn. That talk resulted in another swab being stuck up her nose and seemingly down to her toes. By this third nose swab / torture she was over it. That girl knows how to scream when she wants to and boy did she scream bloody murder. I did't blame her.
Mom's of cancer kids often get called Mom-acologists. We learn a lot going through this process. We learn a lot about the medical "stuff" but also gain the confidence to always ask questions, clarify and help make decisions. I saw this in myself several times in the ER Sunday. Here are a few examples:
Without being asked I immediately indicated that I didn't feel Madelyn's counts would probably be low because she just finished a five day pulse of Dexamethazone. I thought a Whooping Cough test might be in order due to possible contact at school.
The amount of blood they drew from Madelyn did not seem enough to me for doing a CBC and blood cultures. As they were leaving I asked them about it and they said we don't have orders for blood cultures. I was sure this was wrong. They called and yes there was a mistake. The blood cultures were needed but were missed in the orders.
When I was speaking with the Nurse Practitioner in charge, Madelyn's IV pole started beeping. Her bolis of saline was complete. Without stooping my conversation, I turned off the IV machine alarm. The NP said "I can't believe you know how to do that. I don't know how to do that."
The ER nurses and NP were all very nice to us and MJ enjoyed all the attention as usual. She took a nap, had snacks and watched a little Thomas the Train on the IPad.
We were released from the ER around 6pm but were still unsure whether we would be picking up some additional medicine at the pharmacy. So we killed a little time reading books in the car and picking up dinner at the grocery store. I decided it would be best to stay in a hotel that night as I wasn't sure what the blood cultures would show. If they were positive it would mean heading back to the hospital for IV antibiotics and possible in-patient stay. Plus I was tired. I really didn't want to drive all the way back home. I also didn't want to go to my sisters and bring MJs sickness to her family.
All the tests came back negative! We heard some initial results that night (no meds to pick up right away) and the next morning blood cultures were negative. She has a common cold. Hooray for a cold.
Even though it is stressful and exhausting it doesn't bother me at all to make these ER runs. If it's nothing. Again, hooray and I can rest easy. If it is an infection that needs to be dealt with immediately, I know we got there are soon as it presented and we are in the best hands. It is just a no brainer.
Tonight, Tuesday, she is feeling much better; just a little run down and no more fever! She is also done with her steroid side effects and we have our Madelyn back! As far as I go... Lock Down (due to Skagit County Whooping Cough outbreak), plus sick kids, plus lots of classic Seattle spring rain = ughhhhhhhhh. Mama is feeling close to loosing it. :)
Sophia's fever was gone and she was feeling much better by Friday, however, Madelyn was noticeably sick. A fever of 101.5 presented itself Sunday morning so it was off to Seattle Children's ER for MJ and I. (As soon as Madelyn gets a fever of 101 we have to head to the hospital).
We were in the ER from about 1:00pm until about 6:00pm. They accessed her port, pulled blood for CBCs and blood cultures and two different instruments were put up her nose for viral tests. We are talking wayyyy up her nose, poor honey. Those tubes and swabs looked like they could have reached her stomach.
Her CBC came back with an ANC of around 7,000 and WBC of 6.2! Her little body was obviously fighting something big time. I had never seen these numbers from Madelyn before and they concerned me so I asked them to talk to Oncology. Poor Madelyn. That talk resulted in another swab being stuck up her nose and seemingly down to her toes. By this third nose swab / torture she was over it. That girl knows how to scream when she wants to and boy did she scream bloody murder. I did't blame her.
Mom's of cancer kids often get called Mom-acologists. We learn a lot going through this process. We learn a lot about the medical "stuff" but also gain the confidence to always ask questions, clarify and help make decisions. I saw this in myself several times in the ER Sunday. Here are a few examples:
Without being asked I immediately indicated that I didn't feel Madelyn's counts would probably be low because she just finished a five day pulse of Dexamethazone. I thought a Whooping Cough test might be in order due to possible contact at school.
The amount of blood they drew from Madelyn did not seem enough to me for doing a CBC and blood cultures. As they were leaving I asked them about it and they said we don't have orders for blood cultures. I was sure this was wrong. They called and yes there was a mistake. The blood cultures were needed but were missed in the orders.
When I was speaking with the Nurse Practitioner in charge, Madelyn's IV pole started beeping. Her bolis of saline was complete. Without stooping my conversation, I turned off the IV machine alarm. The NP said "I can't believe you know how to do that. I don't know how to do that."
The ER nurses and NP were all very nice to us and MJ enjoyed all the attention as usual. She took a nap, had snacks and watched a little Thomas the Train on the IPad.
We were released from the ER around 6pm but were still unsure whether we would be picking up some additional medicine at the pharmacy. So we killed a little time reading books in the car and picking up dinner at the grocery store. I decided it would be best to stay in a hotel that night as I wasn't sure what the blood cultures would show. If they were positive it would mean heading back to the hospital for IV antibiotics and possible in-patient stay. Plus I was tired. I really didn't want to drive all the way back home. I also didn't want to go to my sisters and bring MJs sickness to her family.
All the tests came back negative! We heard some initial results that night (no meds to pick up right away) and the next morning blood cultures were negative. She has a common cold. Hooray for a cold.
Even though it is stressful and exhausting it doesn't bother me at all to make these ER runs. If it's nothing. Again, hooray and I can rest easy. If it is an infection that needs to be dealt with immediately, I know we got there are soon as it presented and we are in the best hands. It is just a no brainer.
Tonight, Tuesday, she is feeling much better; just a little run down and no more fever! She is also done with her steroid side effects and we have our Madelyn back! As far as I go... Lock Down (due to Skagit County Whooping Cough outbreak), plus sick kids, plus lots of classic Seattle spring rain = ughhhhhhhhh. Mama is feeling close to loosing it. :)
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