Madelyn had a big chemo day scheduled on Monday. I was anxious for her to proceed with her chemo - I do not like delays. Not because they disrupt our lives, but because her chemo is important. Those toxic chemicals are killing the beast and the worry of relapse is constantly on my mind. It probably will always be. For the rest of my life.
Her counts were good. They have returned to Madelyn's "normal" ... meaning she is not showing signs of being sick... and she is certainly feeling and acting that way! Sophia and Madelyn both have been so happy walking off to school this week.
Hem 36.9 Plat 164 WBC 2.0 ANC 946
She went to The Sleepy Room for chemo in her Central Nervous System via spinal tap. While in there they also gave her the annual flu shot. I was surprised and very happy that she was able to get this. Most cancer patients can not receive regular immunizations so I assumed no flu shot either. As you know, cancer patients immune systems are depressed and introducing these potentially deadly diseases is well, not good. Peter and I are very, very pro-vaccination. We have a Global Village mindset - each vaccination our children receive doesn't just protect them it protects the worlds children. We had Madelyn receive all her Kindergarten vaccinations early, with doctor's approval, when she was four. I am so happy about that decision now...
She will not have her regular steroid pulse this week. The steroids can cause the flu shot to be ineffective so she will have the five days of steroids starting next week. She had her usual Vincristine infusion and we are now waiting to see if she has any pain from this. It is to be expected with the Vincristine chemo... but last month she did not need any oxycodone (pain meds) at all. We'll see what this week holds...
Peter and I decided this summer that each of us would take a week vacation on our own. A little re-couping time. Peter went climbing in the Bugaboos with his friend Jim Thompson in August. I will be heading to my old town New York City on October 24th. There is a big annual photography conference, I will be visiting one of my best friends and gallery hoping. I am really excited. Peter will be heading up the home front on his own...
Thursday, October 13, 2011
Wednesday, October 5, 2011
October 5
Monday afternoon Madelyn started running a low grade temperature. The fever continued until Tuesday morning and she was acting sick - so we called Children's. They told us to come in as soon as possible... let me tell you those are NOT fun words to hear. Madelyn and I packed up for a inpatient stay, put her Elma cream on and headed south. Sophia was also running a temperature so she and Peter stayed home. The fevers didn't surprise us as two parents from school contacted us and her two best friends were also sick.
I hate, hate, hate these reminders of the danger Madelyn lives in. I hate cancer. It was a long drive to Seattle.
It looks like she will be ok this time around though. As soon as we arrived we were ushered back to a room, her port was accessed and was immediately evaluated by an Oncologist. She was given some Tylenol and received an hour of fluids. We are not allowed to give Madelyn Tylenol unless instructed to by an Oncologist. They need to know when a fever is presenting itself. Her blood was drawn for a CBC and blood cultures. She also gave a urine sample. Then we waited for her blood cell counts to come back...
Hem 39.2 Plat 146 WBC 2.7 ANC 2052
Because her ANC is so high her body is able to fight this off. If she had a fever and a low ANC we would immediately be inpatient. She would have received 48 hours of IV antibiotics and not released until she was 48 hours fever free. Luckily, this didn't happen.
I decided to go to my sisters house in case her fever continued. I was allowed to giver her Tylenol until 7am this morning and then if the fever continued we were to go back to the hospital. She was essentially fever free from the afternoon until this morning so we headed home today. We are still waiting on the blood cultures and urine sample, but she is already noticeably feeling better. My feeling is all will be well...
I hate, hate, hate these reminders of the danger Madelyn lives in. I hate cancer. It was a long drive to Seattle.
It looks like she will be ok this time around though. As soon as we arrived we were ushered back to a room, her port was accessed and was immediately evaluated by an Oncologist. She was given some Tylenol and received an hour of fluids. We are not allowed to give Madelyn Tylenol unless instructed to by an Oncologist. They need to know when a fever is presenting itself. Her blood was drawn for a CBC and blood cultures. She also gave a urine sample. Then we waited for her blood cell counts to come back...
Hem 39.2 Plat 146 WBC 2.7 ANC 2052
Because her ANC is so high her body is able to fight this off. If she had a fever and a low ANC we would immediately be inpatient. She would have received 48 hours of IV antibiotics and not released until she was 48 hours fever free. Luckily, this didn't happen.
I decided to go to my sisters house in case her fever continued. I was allowed to giver her Tylenol until 7am this morning and then if the fever continued we were to go back to the hospital. She was essentially fever free from the afternoon until this morning so we headed home today. We are still waiting on the blood cultures and urine sample, but she is already noticeably feeling better. My feeling is all will be well...
Tuesday, September 27, 2011
Sept 27
Madelyn had a CBC at Island Hospital yesterday. Her numbers were right where her doctor wants them to be. We're hoping it will stay just like that for her treatment appointment in two weeks.
The accessing was by far her easiest one yet. Very little anxiety at all! It was amazing.
WBC 2.9 Hem 36.3 Plat 319 ANC 1507
She is feeling good and still bouncing with energy. Both girls have been uber fun lately...
Please note: Madelyn's blog now has an email feature. You can sign up to get notified whenever I post...
"Life is about living young, being youthful and enjoying yourself everyday because every day is important." ~ Paul Smith, designer
The accessing was by far her easiest one yet. Very little anxiety at all! It was amazing.
WBC 2.9 Hem 36.3 Plat 319 ANC 1507
She is feeling good and still bouncing with energy. Both girls have been uber fun lately...
Please note: Madelyn's blog now has an email feature. You can sign up to get notified whenever I post...
"Life is about living young, being youthful and enjoying yourself everyday because every day is important." ~ Paul Smith, designer
Thursday, September 15, 2011
Sept 15
We had appointments Monday at Seattle Children's. We arrived at 7:30am, accessing and blood draw at 8am then doctor's visit at 9am. Madelyn was not able to eat that morning as she was scheduled for a spinal tap at 10am. However, when we arrived at Children's Madelyn starting acting extremely tired. As soon as we arrived they put us in a room. After accessing she fell asleep on the exam table. This is very unusual for Madelyn and her doctor noticed it.
Her blood counts came back with elevated white blood cells. This is an indication that she might be coming down with a something as her immune system is "ramping up" to fight something off. (Our white blood cells basically "gobble up" infection/germs...). The way she was acting seemed to indicate that too...
She has continued to be a little off this week, but no major sickness has manifested. It might be just a small virus, but Madelyn's immune system is suppressed so she feels it.
Hem 39.7 Plat 244 WBC 5.2 ANC 3557
Her spinal tap was canceled and will be rescheduled for four weeks from now. As soon as she ate she started to perk up so low blood sugar might have played a part as well. She still wanted to go to swimming lessons, but didn't have her usual energy and was a bit cranky.
She went to school the next day, but was asleep by 5:45pm that night. Today, Thursday, she didn't get to school until noon. She slept all morning.
She still had her Vincristine (chemo) infusion and has started her pulse of steroids. So we are seeing the emotional roller coasters...
Before I get to the images from the last week.... MORE BIG NEWS!!! MADELYN LOST HER FIRST TOOTH!!! And let me tell you she was excited. I was told to text Amy and Pat, Janet and Mathew and Luke and all the Grandparents right away. In true Madelyn fashion, she was eating a piece of cauliflower when it came out.
Her blood counts came back with elevated white blood cells. This is an indication that she might be coming down with a something as her immune system is "ramping up" to fight something off. (Our white blood cells basically "gobble up" infection/germs...). The way she was acting seemed to indicate that too...
She has continued to be a little off this week, but no major sickness has manifested. It might be just a small virus, but Madelyn's immune system is suppressed so she feels it.
Hem 39.7 Plat 244 WBC 5.2 ANC 3557
Her spinal tap was canceled and will be rescheduled for four weeks from now. As soon as she ate she started to perk up so low blood sugar might have played a part as well. She still wanted to go to swimming lessons, but didn't have her usual energy and was a bit cranky.
She went to school the next day, but was asleep by 5:45pm that night. Today, Thursday, she didn't get to school until noon. She slept all morning.
She still had her Vincristine (chemo) infusion and has started her pulse of steroids. So we are seeing the emotional roller coasters...
Before I get to the images from the last week.... MORE BIG NEWS!!! MADELYN LOST HER FIRST TOOTH!!! And let me tell you she was excited. I was told to text Amy and Pat, Janet and Mathew and Luke and all the Grandparents right away. In true Madelyn fashion, she was eating a piece of cauliflower when it came out.
Asleep on the exam table.
Waking up when the doctor came in...
This is a wall in Oncology... just a fraction of the kids being treated there. I think there should be a national "Hug a Pediatric Oncology Doctor or Nurse" Day. Talk about one of the hardest jobs emotionally...
"Oh Mommy! Check out that Giraffe! Can we have it?" Ummm... that would be No.
Checking out a painting in one of the hospital hallways.
Since her spinal tap was canceled we had a little waiting to do for swimming...
When Sophia comes with us, one of us goes in the pool with her so she can splash around too.
First day of school 2011. Sophia is so proud to be going to school with sister. There is no one better - in the whole wide world - than Madelyn.
Waiting outside to be brought in. So excited.
Thursday, September 8, 2011
Light the Night on Sept 24th in Seattle
I wanted you all to know that Madelyn's wonderful swimming teacher at Seattle Children's hospital will be walking in Madelyn's honor for the Leukemia and Lymphoma Societies Light The Night Walk. When I told MJ this she was so happy. She loves Tarrah and swimming lessons. Swimming at the pool is the fun thing at the end of treatment. She deserves something fun after being poked & prodded, examined, drugs being injected in her and waiting and waiting and waiting.
Light The Night Walk:
Taking Steps To Cure Cancer
Each year, in communities all across the United States and Canada teams of families, friends, co-workers and local and national corporations come together to raise funds for The Leukemia & Lymphoma Society's (LLS's) Light The Night Walk events and bring help and hope to people battling blood cancers.
Every Light The Night walker is encouraged to become a Champion For Cures by raising $100 or more to help fight blood cancer.
Funds raised by teams and individual walkers provide:
- Lifesaving blood cancer research
- Free educational materials and events for patients and their families
- Local programs such as Family Support Groups and First Connection, a peer-to-peer counseling program
- Comprehensive, personalized assistance through our Information Resource Center
Light The Night Walk events are evenings filled with inspiration. During this leisurely walk, walkers carry illuminated balloons - white for survivors, red for supporters and gold in memory of loved ones lost to cancer - thousands of walkers - men, women and children - form a community of caring, bringing light to the dark world of cancer.
We are Taking Steps To Cure Cancer! Join us!
- Click here to register now to become part of Light The Night 2011
- Click here to find a local team or create your own team.
- Need to find your most convenient, local walk site for time and date information? Click here.
Quick facts about Walk night:
- Illuminated balloons, Light the Night T-shirts and a wrist band entitling walkers to enjoy food and refreshments are provided to all walkers who become a Champion For Cures by raising $100 or more to help fight blood cancer.
- The Walk is done at a leisurely pace and takes less than an hour to complete.
Saturday, August 27, 2011
August 26
Hi everyone! We are enjoying having nothing to report these days! No news on this blog, is good news.
Yesterday Madelyn had a CBC. Our first visit to the Cancer Care Center at Island Hospital! No drive to Seattle!! It was wonderful. The nurses we worked with were knowledgeable, helpful and caring. They had no troubles listening to Madelyn and accessing her exactly how she wanted it done. They asked me if there was anything they needed to know about how MJ liked things done. I said "oh you ask her. She can tell you." Somehow though, I still started to chime in about this and that. Madelyn turned to me with her little attitude chin swing and a roll of her eyes and said "Mommy, I can tell them." "Oh yes, yes, your right honey you tell them." And she did.
A super big thank you to whoever that caring, giving man is who anonymously donated $50,000 to the new Cancer Care Center at Island Hospital... and alllll the donors that are making this new facility possible. We need it.
Madelyn's CBC results came back so fast - in about 15-20 minutes - and they faxed our Oncologist directly at Seattle Children's. She is still good and holding steady right where they want her:
ANC 1000 RBC 38.8 WBC 2.2 (up quite a bit from last) Plat 348
Madelyn has continued the one week of not feeling good and three weeks of feeling just fabulous. Seriously, we have not seen her this good in a couple years. It makes Peter and I so incredibly happy. The one week of not feeling good comes from the steroids, constipation from the chemo and pain from the chemo. It lasts about seven days.
In emotional news... this week I had an MRI. When I was 19 years old I had a bone tumor on my knee. I had surgery immediately after it was found and the surgery revealed the tumor to be benign (non-cancerous). There wasn't a lot of time to be worried... although my Mom and Dad might say differently...
Well the site of that surgery has been bothering me for a few months. Luckily everything is fine. The results of the MRI were negative for new tumor growth. The surgery was almost 20 years ago so it is probably just going to bother me a little for the rest of my life. Our bodies aren't really meant to be cut open.
The MRI was hard for me though. I do not sit still well. Laying there for 30 minutes was torture. It also gave me too much time to think about MJ. I laid there and cried. Cried about all that she has gone through and how I just couldn't do it. She is so brave. I know we say it over and over and over again... but laying there I realized I couldn't do it. I am an awful patient. The MRI brought back all these awful memories of being diagnosed. That blur of an evening driving to Seattle after Dr Olmstead told us the suspected Leukemia. My moments of absolute sobbing, confusion and worry. Our 10 day inpatient stay learning about caring for a child with cancer. Getting used to the word cancer being so intimately part of our lives.
Then after the MRI and the crying, I went to the beach to find Madelyn in her underpants and swimming in the ocean laughing.
Yesterday Madelyn had a CBC. Our first visit to the Cancer Care Center at Island Hospital! No drive to Seattle!! It was wonderful. The nurses we worked with were knowledgeable, helpful and caring. They had no troubles listening to Madelyn and accessing her exactly how she wanted it done. They asked me if there was anything they needed to know about how MJ liked things done. I said "oh you ask her. She can tell you." Somehow though, I still started to chime in about this and that. Madelyn turned to me with her little attitude chin swing and a roll of her eyes and said "Mommy, I can tell them." "Oh yes, yes, your right honey you tell them." And she did.
A super big thank you to whoever that caring, giving man is who anonymously donated $50,000 to the new Cancer Care Center at Island Hospital... and alllll the donors that are making this new facility possible. We need it.
Madelyn's CBC results came back so fast - in about 15-20 minutes - and they faxed our Oncologist directly at Seattle Children's. She is still good and holding steady right where they want her:
ANC 1000 RBC 38.8 WBC 2.2 (up quite a bit from last) Plat 348
Madelyn has continued the one week of not feeling good and three weeks of feeling just fabulous. Seriously, we have not seen her this good in a couple years. It makes Peter and I so incredibly happy. The one week of not feeling good comes from the steroids, constipation from the chemo and pain from the chemo. It lasts about seven days.
In emotional news... this week I had an MRI. When I was 19 years old I had a bone tumor on my knee. I had surgery immediately after it was found and the surgery revealed the tumor to be benign (non-cancerous). There wasn't a lot of time to be worried... although my Mom and Dad might say differently...
Well the site of that surgery has been bothering me for a few months. Luckily everything is fine. The results of the MRI were negative for new tumor growth. The surgery was almost 20 years ago so it is probably just going to bother me a little for the rest of my life. Our bodies aren't really meant to be cut open.
The MRI was hard for me though. I do not sit still well. Laying there for 30 minutes was torture. It also gave me too much time to think about MJ. I laid there and cried. Cried about all that she has gone through and how I just couldn't do it. She is so brave. I know we say it over and over and over again... but laying there I realized I couldn't do it. I am an awful patient. The MRI brought back all these awful memories of being diagnosed. That blur of an evening driving to Seattle after Dr Olmstead told us the suspected Leukemia. My moments of absolute sobbing, confusion and worry. Our 10 day inpatient stay learning about caring for a child with cancer. Getting used to the word cancer being so intimately part of our lives.
Then after the MRI and the crying, I went to the beach to find Madelyn in her underpants and swimming in the ocean laughing.
Thursday, August 18, 2011
August 18
Madelyn had her monthly appointment at Seattle Children's Monday.
Please re-read the most important line of that last sentence. Her MONTHLY appointment. Send us some big "oh ya's!", "you go girls!" and celebration dances our way. MONTHLY!!! We are a family again, living our life in ANACORTES (not Seattle) and returning to a somewhat normal routine.
She will have monthly appointments for CBC's, doctor visits and chemo in Seattle. We will give her chemo every night orally. Then, there will be in-between CBCs (complete blood counts... to see how her immune system is doing) at Island Hospital here in Anacortes. All usually occurring on Mondays.
So Monday she had her Vincristine infusion (chemo) and started her Dexamethazone (steroid). So this is our hard week. Pains, crankiness, emotional ups and downs and trouble sleeping. But I will take it for the three weeks of absolute Madelyn bliss we have experience the other three weeks. She is feeling good. Not just good, but better than we have seen her in a year and a half. Energy. Happiness. No tantrums. She is so fun.
At her appointment her Hematicrit and platletes were normal. WBC and ANC a little low, but still within range of what our doctor wants to see. WBC was 1.3 and ANC 928. No changes to her chemo. No increase in the weekly Methotrexate chemo dosing.
She said goodbye to the apartment on Monday too. We are all a little sad to see it go, but I hope we will never ever, ever... EVER... need an apartment in the city again. It was our mini-home with lots of wonderful memories. We loved the location (right next to Magnuson Park and the Burke Gilman Trail), the feeling of it, the memories (bad and good) we had there. When we were released from being inpatient at the hospital - we went there. We had Christmas during Induction (the first hard month) there. I will never forget what that felt like.
She is in low-dose chemo mode now though. So EVERY little thing makes me worry about relapse. Every pain, every bruise. I guess this will be my mental state for the next five or so years though. Get used to it, right? Ugh.
Madelyn starts Kindergarten in just a few weeks. Hard to believe ... Kindergarten. I am filled with such angst about the return to school in the fall. It is Madelyn's natural environment... people, kids, activity, talking, learning, opinions and sharing... but it will also be filled with germs and all those winter time flu's and cold's. Hopefully, NOT filled with any major diseases that could be very, very hazardous for MJ... like chicken pox, whooping cough, etc. Her immune system will still be suppressed so she won't be working on a full germ-fighting tank. It's inevitable, I know, but I'm not looking forward to that worry and rushes to the ER. I'm sure they will occur though...
Ok, now for something fun... more images from Switzerland!!
Please re-read the most important line of that last sentence. Her MONTHLY appointment. Send us some big "oh ya's!", "you go girls!" and celebration dances our way. MONTHLY!!! We are a family again, living our life in ANACORTES (not Seattle) and returning to a somewhat normal routine.
She will have monthly appointments for CBC's, doctor visits and chemo in Seattle. We will give her chemo every night orally. Then, there will be in-between CBCs (complete blood counts... to see how her immune system is doing) at Island Hospital here in Anacortes. All usually occurring on Mondays.
So Monday she had her Vincristine infusion (chemo) and started her Dexamethazone (steroid). So this is our hard week. Pains, crankiness, emotional ups and downs and trouble sleeping. But I will take it for the three weeks of absolute Madelyn bliss we have experience the other three weeks. She is feeling good. Not just good, but better than we have seen her in a year and a half. Energy. Happiness. No tantrums. She is so fun.
At her appointment her Hematicrit and platletes were normal. WBC and ANC a little low, but still within range of what our doctor wants to see. WBC was 1.3 and ANC 928. No changes to her chemo. No increase in the weekly Methotrexate chemo dosing.
She said goodbye to the apartment on Monday too. We are all a little sad to see it go, but I hope we will never ever, ever... EVER... need an apartment in the city again. It was our mini-home with lots of wonderful memories. We loved the location (right next to Magnuson Park and the Burke Gilman Trail), the feeling of it, the memories (bad and good) we had there. When we were released from being inpatient at the hospital - we went there. We had Christmas during Induction (the first hard month) there. I will never forget what that felt like.
She is in low-dose chemo mode now though. So EVERY little thing makes me worry about relapse. Every pain, every bruise. I guess this will be my mental state for the next five or so years though. Get used to it, right? Ugh.
Madelyn starts Kindergarten in just a few weeks. Hard to believe ... Kindergarten. I am filled with such angst about the return to school in the fall. It is Madelyn's natural environment... people, kids, activity, talking, learning, opinions and sharing... but it will also be filled with germs and all those winter time flu's and cold's. Hopefully, NOT filled with any major diseases that could be very, very hazardous for MJ... like chicken pox, whooping cough, etc. Her immune system will still be suppressed so she won't be working on a full germ-fighting tank. It's inevitable, I know, but I'm not looking forward to that worry and rushes to the ER. I'm sure they will occur though...
Ok, now for something fun... more images from Switzerland!!
swimming at Lake Zurich
on the bus with Grandma and Grandpa
strutting her stuff after her purchase at Franz Karl Weber (big toy store in Zurich) thanks to Grandma and Grandpa
horsing around at the chocolate store
lots of these were consumed by all, but especially Phia loves her Bratwurst!
Sleeping, very uncomfortably, in the stroller after a long, hot day in the city.
evening dinner at cousin Bettina's
We stayed at Bettina's home for the first week of our trip.
Sophia watching the elephants at the Zurich Zoo.
MJ heading down a slide with Thierry.
Napping during lunch at the Zoo.
Wiped out after the Zoo. It was hot that day.
at the beach with Bettina
Nastenka and Tiziana
During the family reunion everyone went to visit their Uncle's beautiful old home.
The family walking to their Uncle's old house.
Walking to lunch with Peter's cousin Christian's family.
Playing games with the cousin's.
Beautiful Sara.
Peter's cousin Christian. We stayed with their family during the second week of our trip.
The cousins taking a break from a long day in the sun and swimming pool. Pingu is the best cartoon for kids who don't speak the same language.
The girls sitting in the gondola looking out over the valley. They loved the gondola ride. They said they felt like they were going into space. This was in the Vallis where we rented an apartment during the third week of our trip.
Swings at the top of the gondola. Then we had lunch. The girls made me sit at a different table during lunch though. They said my Swiss dish with lots of cheese was too stinky and Phia started gagging.
On a little hike...
Peter playing with the girls at the Haupbahnhopf (the big main train station in Zurich).
Our new cousin... baby Nico.
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