Our appointments went very smoothly today. Out the door with both girls at 7:45am. Port accessed for blood counts at 8:00am. Starbucks. Princess Belle and the new Puppy twice. Exam and CBC review with doctors at 9:15am. Infusion of two types of chemotherapy at 10:15am. Back to the apartment by 11:30am. Made grilled cheese and soup which were passionately rejected by both girls. A bowl of mac-and-cheese was produced and received greater approval. Followed by play, play, play.
I am still amazed by this girl. She had two types of chemotherapy today. The nurses were telling me we would need to give her anti-nausea and pain meds by bed time. Nope. She was busy, happy, eating and drinking like a champ and tantrum free all day. No upset belly. No pain. Madelyn and Sophia had several very long play periods - just the two of them, no fighting. One of these were after their baths. It included about an hour of nude princesses. That's right. Picture it. Little cuties running around with tiara's, wands, high healed shoes, necklaces, bracelets, sunglasses and their birthday suits.
Part of MJs chemo session included a one hour infusion of fluids. One of our doctors found us in the infusion area and said they discussed this.... because Madelyn is so good at eating (veggie girl) and drinking - no one hour sit for us today! I turned off the TV and told Madelyn to listen to the doctor. I made him repeat the information. Madelyn drank like a champ today.
I was expecting some trouble walking by the end of the evening, but none so far. We'll see how she does tomorrow and in Physical Therapy. She hasn't had Vincristine for three weeks now so maybe it has more of an accumulative effect. She'll have it every week for the next 8 weeks so we will most likely be seeing troubles walking again.
Her counts were overall pretty good and she was able to enter the next phase of treatment today. Interim Maintenance. This will last 8 weeks and she'll have chemotherapy approximately every 10 days. White blood cells are pretty low and platelets and ANC are lower than last week. For a person with Leukemia, these are good numbers though.
Hematocrit 36.8 Platelet 254 WBC 2.4 ANC 1140
On the personal side, it was a hard week for dealing with the girls difficult and unreasonable behavior. I am still hitting the parenting books hard. The doctors are recommending contacting Child Life for more reading and therapy recommendations. We're trying not to jump in too soon... the books have a lot of good suggestions. A few I have already seen help the last couple days. I keep thinking, lets just give our selves a little room to be irrational. All of us. All four of us are going through hard transitions and emotional adjustments.
Interim Maintenance (next 8 weeks) will be a relatively "calmer" period for Madelyn's treatment. We have decided to take a few sanity days now. Peter went skiing for four days with a guiding buddy and I will take the same time in a few weeks. My Dad helped me at the hospital today and was able to see "the process." It feels like we are starting to find a rhythm with the back and forth between towns. A treatment rhythm. It's just the everyday life rhythm we haven't got figured out yet.
Monday, January 31, 2011
Monday, January 24, 2011
Jan 23
Madelyn's appointment today went well and thankfully uneventful. Her counts are still good and she will most likely enter the next phase as scheduled: Interim Maintenance.
Hem 36.9 Platelet 312 WBC 3.1 ANC 1631
Tomorrow we have Physical Therapy, a meeting with our scheduler for appointments and medication pickup. Then home!
Hem 36.9 Platelet 312 WBC 3.1 ANC 1631
Tomorrow we have Physical Therapy, a meeting with our scheduler for appointments and medication pickup. Then home!
Sunday, January 23, 2011
Jan 22
Miraculously, Madelyn did NOT get the stomach bug. We are so relieved; my eyebrows have started to unfurl. My sister bought us Clorox wipes. I wiped every handle in the apartment a couple times a day. I wiped the toliet and sinks several times a day. I wore a mask all day long. I put sanitizing gel on my hands every 15 minutes. I was the definition of OCD. I think it worked.
The rest of week was still difficult though. Madelyn has had extremely unreasonable behavior a couple of times a day. It has been infuriating, depressing, confusing and exhausting. We are in Seattle tonight and have a doctor's appointment tomorrow. This new behavior is at the top of my "questions" list. Is it one of her medications (the side effect descriptions do not list this)? Or is she starting to react emotionally to this complete lack of control she has over her life. Peter and I are both guessing it is the later. The Childhood Leukemia bible I have been reading and, well, finished weeks ago (OCD) lists several books to help parents and kids deal with some of the emotions. I went out and ordered them all.
Phia too has had a hard week. She was left with my parents again one night during the "sickness" and woke up that morning to another unusual situation. Grandma was gone (in Seattle because Peter got sick). My Dad does great with MJ and Phia (he raised four girls for pete's sake) and Phia loves Grandpa... it's just that it was another unusual situation. Poor thing has no routine anymore! The next night she spent with Ashley. Which was different, but probably a really good thing. Ashley is a great source of comfort for Phia and she is missing her so much. Peter had a hard time not having Phia home (he was starting to feel better that night), but he would have been no fun and it was good for Phia to be with Ashley.
It makes me so happy that my girls have strong relationships with adults other than their family. I know that this will be influential for them not only in the immediate, but in the future. Madelyn was taken care of by our dear friend Janet from age 9 months until she was almost 3 years old. Madelyn still feels a strong connection with Janet, 2 years later. Ashley will be the same for Phia. This is good. It makes me happy.
Overall, Madelyn has had wonderful energy this week and is walking better than we've seen in a while. Before bed tonight she asked if she had "just the pokey tomorrow" or "the pokey and sleepy room" (spinal tap). I said "just a pokey to get your blood counts and a talk with the doctor". She had a big smile after that. Tuesday, she has Physical Therapy in the morning and then we head home! I suspect it will be a good week.
If her counts are where they should be on Jan 31st, she will begin a phase of treatment called Interim Maintenance (approx 8 weeks). A somewhat calmer period before we start another intensive treatment period (another 8 week stretch). During this intensive period we will be in Seattle full time again.
The rest of week was still difficult though. Madelyn has had extremely unreasonable behavior a couple of times a day. It has been infuriating, depressing, confusing and exhausting. We are in Seattle tonight and have a doctor's appointment tomorrow. This new behavior is at the top of my "questions" list. Is it one of her medications (the side effect descriptions do not list this)? Or is she starting to react emotionally to this complete lack of control she has over her life. Peter and I are both guessing it is the later. The Childhood Leukemia bible I have been reading and, well, finished weeks ago (OCD) lists several books to help parents and kids deal with some of the emotions. I went out and ordered them all.
Phia too has had a hard week. She was left with my parents again one night during the "sickness" and woke up that morning to another unusual situation. Grandma was gone (in Seattle because Peter got sick). My Dad does great with MJ and Phia (he raised four girls for pete's sake) and Phia loves Grandpa... it's just that it was another unusual situation. Poor thing has no routine anymore! The next night she spent with Ashley. Which was different, but probably a really good thing. Ashley is a great source of comfort for Phia and she is missing her so much. Peter had a hard time not having Phia home (he was starting to feel better that night), but he would have been no fun and it was good for Phia to be with Ashley.
It makes me so happy that my girls have strong relationships with adults other than their family. I know that this will be influential for them not only in the immediate, but in the future. Madelyn was taken care of by our dear friend Janet from age 9 months until she was almost 3 years old. Madelyn still feels a strong connection with Janet, 2 years later. Ashley will be the same for Phia. This is good. It makes me happy.
Overall, Madelyn has had wonderful energy this week and is walking better than we've seen in a while. Before bed tonight she asked if she had "just the pokey tomorrow" or "the pokey and sleepy room" (spinal tap). I said "just a pokey to get your blood counts and a talk with the doctor". She had a big smile after that. Tuesday, she has Physical Therapy in the morning and then we head home! I suspect it will be a good week.
If her counts are where they should be on Jan 31st, she will begin a phase of treatment called Interim Maintenance (approx 8 weeks). A somewhat calmer period before we start another intensive treatment period (another 8 week stretch). During this intensive period we will be in Seattle full time again.
Tuesday, January 18, 2011
Jan 18
Well... it's been epic.
Saturday early morning Phia woke up vomiting. She basically threw up every hour from 2:30am - 8:30am. Poor noodle. I stayed with her and Peter stayed away. Phia and I went to my parents house the next day and spent the whole day sequestered. She seemed good all day. We thought it was probably just one of those little kid things.
Sunday the Rutz clan, Harrington clan, Fowler/Dawson clan, Hamer/Hines gals and Ashley threw a hat party for MJ. It was so fun. For all of us. It was wonderful having our family-of-friends and MJs good buddies all together. THANK YOU everyone. We LOVE you. Madelyn had amazing energy that day. She even walked all the way down to N Ave Beach and back after the party!
Sunday night I started with the vomiting. Ugh. Again, Peter got out of the house first thing in the morning with the girls. Phia went to my parents and Peter took MJ to Seattle for todays treatments. I slowly started feeling better during the day.
From Seattle Monday evening 7:30pm Peter called. He was getting it. (Damn that kiss!)
My Mom jumped in the car and came down to Seattle arriving at 9:30pm.
Peter jumped in the car home and started throwing up as he walked in the door.
I got up at 6:30am and drove to Seattle. With mask on, staying in isolation areas from other patients, sanitizing gel every 5 minutes, I got Madelyn through treatment with my Moms help. I collapsed in our bed after we got home from the appointment at 3:00pm. Mom went grocery shopping. I wore a mask from 9:00am this morning until now. Very strange.
Now Madelyn and I will be staying a couple extra days to make sure she does not get sick. I wish there was something, anything I could do to insure she doesn't get it.
Peter is recovering tonight and Phia is having a sleep over with our dear Ashley. Thank goodness for my Dad, Mom and Ashley the last 24 hours.
Happy Birthday Mom. Tomorrow is my Mom's 60th Birthday. Her big birthday bash was canceled to help us and now the day before her birthday she is rushing down to Seattle late at night. Now we can't be home for her birthday. If any of you know my Mom out there she deserves extra special xoxo's, Happy Birthday notes and warm wishes tomorrow. terryleemacdonald@msn.com. I love you Mom.
Madelyns counts were good again today and she breezed through her treatments and doctors appointment even with a two hour wait. Appointments after a holiday = never fun. She had no problems with accessing her port, but still was a little nervous before her lumbar puncture. It's kind of a scary looking room. Lots of tubes, wires, beeping machines and masked people in a tiny little space. A few tears, but she did great. I gave her some pain medicine before leaving the hospital today and that really made a difference in her comfort level for the rest of the day.
Hem 35.2 Plat 411 WBC 3.3 ANC 1422
There are about 50 unanswered emails in my inbox. Sorry everyone. Love you and will get back with you very soon. xoxo
Saturday early morning Phia woke up vomiting. She basically threw up every hour from 2:30am - 8:30am. Poor noodle. I stayed with her and Peter stayed away. Phia and I went to my parents house the next day and spent the whole day sequestered. She seemed good all day. We thought it was probably just one of those little kid things.
Sunday the Rutz clan, Harrington clan, Fowler/Dawson clan, Hamer/Hines gals and Ashley threw a hat party for MJ. It was so fun. For all of us. It was wonderful having our family-of-friends and MJs good buddies all together. THANK YOU everyone. We LOVE you. Madelyn had amazing energy that day. She even walked all the way down to N Ave Beach and back after the party!
Sunday night I started with the vomiting. Ugh. Again, Peter got out of the house first thing in the morning with the girls. Phia went to my parents and Peter took MJ to Seattle for todays treatments. I slowly started feeling better during the day.
From Seattle Monday evening 7:30pm Peter called. He was getting it. (Damn that kiss!)
My Mom jumped in the car and came down to Seattle arriving at 9:30pm.
Peter jumped in the car home and started throwing up as he walked in the door.
I got up at 6:30am and drove to Seattle. With mask on, staying in isolation areas from other patients, sanitizing gel every 5 minutes, I got Madelyn through treatment with my Moms help. I collapsed in our bed after we got home from the appointment at 3:00pm. Mom went grocery shopping. I wore a mask from 9:00am this morning until now. Very strange.
Now Madelyn and I will be staying a couple extra days to make sure she does not get sick. I wish there was something, anything I could do to insure she doesn't get it.
Peter is recovering tonight and Phia is having a sleep over with our dear Ashley. Thank goodness for my Dad, Mom and Ashley the last 24 hours.
Happy Birthday Mom. Tomorrow is my Mom's 60th Birthday. Her big birthday bash was canceled to help us and now the day before her birthday she is rushing down to Seattle late at night. Now we can't be home for her birthday. If any of you know my Mom out there she deserves extra special xoxo's, Happy Birthday notes and warm wishes tomorrow. terryleemacdonald@msn.com. I love you Mom.
Madelyns counts were good again today and she breezed through her treatments and doctors appointment even with a two hour wait. Appointments after a holiday = never fun. She had no problems with accessing her port, but still was a little nervous before her lumbar puncture. It's kind of a scary looking room. Lots of tubes, wires, beeping machines and masked people in a tiny little space. A few tears, but she did great. I gave her some pain medicine before leaving the hospital today and that really made a difference in her comfort level for the rest of the day.
Hem 35.2 Plat 411 WBC 3.3 ANC 1422
There are about 50 unanswered emails in my inbox. Sorry everyone. Love you and will get back with you very soon. xoxo
Saturday, January 15, 2011
Jan 10, Jan 11, Jan 12
So Monday night I find myself sobbing holding Madelyn while she is screaming and crying. She does not want me to brush her hair. I want to brush her hair. She has the worst matte I’ve seen in a long time. Her hair is so straight it has a matte in it almost every day, but this one is baaaad. I also think that brushing it will help collect all that hair that is falling out and itching her head. So there you go. All my rationale for attempting to brush her hair. Yet, I can’t seem to get past the “so what” in my head. Who cares if she has a matte in her hair!
It is so hard to define my priorities these days. What do I need to do? I need to support Madelyn through treatment. I need to make sure Madelyn takes her medicine. I need to make sure we all eat and sleep. I need to make sure both girls are happy, creating and interested. But what else? How do I decide what is important? I can not figure it out. I feel seriously stumped and almost motionless. Life was relatively straight forward before and now it is just … not.
And then... it probably wasn’t a wise choice to try and brush her hair at bed time. After almost 5 years at this you think I would have that one figured out. First thing in the morning, while fresh and happy = good time for brushing hair. Right before bed, when overly tired and superbly cranky = bad time for brushing hair.
The point is, probably all too obviously, I can’t figure out what is important anymore. Other than Madelyn and Sophia. Even poor, wonderful Peter is taking a backseat. I know ...I need to give myself time. (Sigh).
It is so hard to define my priorities these days. What do I need to do? I need to support Madelyn through treatment. I need to make sure Madelyn takes her medicine. I need to make sure we all eat and sleep. I need to make sure both girls are happy, creating and interested. But what else? How do I decide what is important? I can not figure it out. I feel seriously stumped and almost motionless. Life was relatively straight forward before and now it is just … not.
And then... it probably wasn’t a wise choice to try and brush her hair at bed time. After almost 5 years at this you think I would have that one figured out. First thing in the morning, while fresh and happy = good time for brushing hair. Right before bed, when overly tired and superbly cranky = bad time for brushing hair.
The point is, probably all too obviously, I can’t figure out what is important anymore. Other than Madelyn and Sophia. Even poor, wonderful Peter is taking a backseat. I know ...I need to give myself time. (Sigh).
One thing I’ve noticed is that Madelyn is asking “what” to everything we say. Maybe this is an age (almost) five thing, I’m not sure. She wants to understand everything we say. Every conversation Peter and I have together, she wants a clear definition about what we are talking about. I am beginning to think she has feelings of worry - more than we realized.
So her appointment on Tuesday for a lumbar puncture (chemotherapy via spinal tap into central nervous system) went well. She is getting more used to going to the "sleepy room" for the "pokie I can't feel." Right now her regiment of chemotherapy is via IV, the weekly lumbar punctures and orally every night (we give her this). Her hair is falling out and making her head very itchy.Her counts are still pretty good:
So her appointment on Tuesday for a lumbar puncture (chemotherapy via spinal tap into central nervous system) went well. She is getting more used to going to the "sleepy room" for the "pokie I can't feel." Right now her regiment of chemotherapy is via IV, the weekly lumbar punctures and orally every night (we give her this). Her hair is falling out and making her head very itchy.Her counts are still pretty good:
Hem 33.1 Platlet 334 WBC 3.4 ANC 1292
On Monday, she started having discomfort when walking again (it comes and goes with treatment), but just refused to walk on Tuesday during her appointment. She was in a wheel chair the whole time. This was concerning to the doctors, not that they haven’t seen it before but just that it is something we need to start addressing with physical therapy right away. It is neropathy from a particular chemotherapy drug she is receiving, as well as, de-conditioning from the weight gain from the steriods. Luckily, she was feeling better for her physical therapy appointment on Wednesday so we made it fun. We dressed them both in track suits for the "stretchy doctor" and Madelyn wore her super hero cape and mask.
Heading into Physical Therapy...
Coloring in the waiting room.
Little evaluation for range of motion change since last appointment. Sophia is saying to Madelyn "you doing ok Madelyn? Not hurting?"
Heading to the gym. They are all three trains. Pulling their horns and saying "choo-choo."
MJ is picking up yarn balls, then jumping on the trampoline while throwing the balls into the basket.
Sophia is following behind copying...
Stair stepping while Sophia is hamin' it up off camera.
BEST part of the day. The girls doctor, Jeanne Olmstead, sent them gift certificates to "shop" at the gift store at the hospital. Oh boy! Did they LOVE this...
Back at the apartment.
Peter's cousin Christian Kuhnlein lives in Switzerland. We all had the most wonderful time with his family this summer at Carola's wedding. He and his wife Claudia have kids the same ages as Phia and MJ. They sent a wonderful project tub for the girls. These little pieces look like styrofoam, but are made of corn. You wet them down and they stick together... the girls made igloos, bracelets, etc.
... and yes... you can stick them anywhere...
"What are you doing Daddy?"
Girls giving Daddy the required tax for a lift upstairs.
“Have I told you lately how wonderful you are?
How the sound of your feet
running from afar
brings dancing rhythms to my day?
How you laugh
and sunshine spills into the room?”
How the sound of your feet
running from afar
brings dancing rhythms to my day?
How you laugh
and sunshine spills into the room?”
~ Barack OBama, of Thee I Sing A Letter to My Daughters
Monday, January 10, 2011
back in Seattle
We are back in Seattle tonight. There is so much to share from our time in Anacortes, but it is almost 11pm and it has been a hard day for me. I will try to write tomorrow but wanted to share these pictures of our beach - N Street Beach. As I mentioned before, we are at this beach weekly... all year long.
Thursday, January 6, 2011
Anacortes...
Me, Peter and Madelyn have all been just sleeping. 12 hours overnight and long naps in the afternoon. We are obviously making up for lost time. I think we all feel relaxed finally.
KP Studio wise, Peter and I have decided to take a pause until the end of the month. We are working on on-going projects but only have a couple photo shoots planned for the month. We just need time to wrap our heads around how all this will work.
Madelyn has been in such great spirits since being home. It has made all of our shoulders loosen and smiles reach upward. She is missing her routine of going to school, but at the same time is reluctant to go outside the house. I'm not sure why... maybe she just wants to be home... maybe she is worried about something...
I finally got her out this afternoon though. I enticed her with her favorite thing at the Gere-A-Deli: Chicken Mango Penne. As we were finishing MJ started a conversation with a nice lady sitting next to us. They chatted about this and that and then Madelyn said to her "I have Leukemia." Very matter-of-fact, just as we talk to her about it. Not with any sadness or negative overtone. Just plain and simple speak. MJ is very proud of being brave; just as we are of her. She continued to tell this woman about how she gets "pokies" and with the magic cream it doesn't hurt at all. "And when they do the back pokies, they just put me to sleep and I don't feel anything." This kind woman happened to volunteer in the Children's Hospital Auxiliary and didn't have any trouble jumping right into the conversation. When we said goodbye I said to her over my shoulder "I guess you don't hear that everyday..."
Madelyn is still doing her drawing furiously, evening taking paper and pens to bed with her now. When I woke up in the morning, I went to find Madelyn and I couldn't. Finally found her in the playroom drawing.
KP Studio wise, Peter and I have decided to take a pause until the end of the month. We are working on on-going projects but only have a couple photo shoots planned for the month. We just need time to wrap our heads around how all this will work.
Madelyn has been in such great spirits since being home. It has made all of our shoulders loosen and smiles reach upward. She is missing her routine of going to school, but at the same time is reluctant to go outside the house. I'm not sure why... maybe she just wants to be home... maybe she is worried about something...
I finally got her out this afternoon though. I enticed her with her favorite thing at the Gere-A-Deli: Chicken Mango Penne. As we were finishing MJ started a conversation with a nice lady sitting next to us. They chatted about this and that and then Madelyn said to her "I have Leukemia." Very matter-of-fact, just as we talk to her about it. Not with any sadness or negative overtone. Just plain and simple speak. MJ is very proud of being brave; just as we are of her. She continued to tell this woman about how she gets "pokies" and with the magic cream it doesn't hurt at all. "And when they do the back pokies, they just put me to sleep and I don't feel anything." This kind woman happened to volunteer in the Children's Hospital Auxiliary and didn't have any trouble jumping right into the conversation. When we said goodbye I said to her over my shoulder "I guess you don't hear that everyday..."
Madelyn is still doing her drawing furiously, evening taking paper and pens to bed with her now. When I woke up in the morning, I went to find Madelyn and I couldn't. Finally found her in the playroom drawing.
Tuesday, January 4, 2011
Coming Home
We got the official word yesterday that Madelyn can come home!!! We are BEYOND thrilled about this. Especially for Madelyn.
If all continues to go well with her treatments AND she doesn't get sick, for the next two phases of treatment we should be able to be in Anacortes. She started the Consolidation phase of her treatment yesterday with a Lumbar Puncture placing chemotherapy in her Central Nervous System and chemotherapy via her port. She also started an oral chemotherapy that Peter and I give her everyday. She is still hurting a little today and we want to see how she reacts to the new chemo, but we are hoping to bring her home tomorrow Wednesday returning most likely on Sunday. We are still waiting for our treatment schedule for the month. She has to have weekly Lumbar Punctures...
Her counts were FABULOUS yesterday: Hem 33 Platelet 319 WBC 7.1 and ANC 2031
A note to all our Anacortes much LOVED ones. In order for Madelyn to be home, it is very important that she not get sick. We can't wait to see everyone, but if anyone even feels "a little something funny in their throat" please stay away until you are sure you feel better. Getting sick is not only hard because her immune system isn't working right, but also because it sets back her chemotherapy schedule. And something like Chicken Pox is actually life threatening for MJ right now....
We will need to be in Seattle 2-3 days a week for chemotherapy and doctor's visits but the rest of the time we can be in Anacortes. I'm so glad we have this apartment to come to for our Seattle days. It really has been perfect. We have decorated it with lots of drawings and crafts and does feel like a mini-Kuhnlein-home. We are just so grateful that this complete disconnection from home does not have to continue. During the last very intense phase of therapy (two months) we will have to be in Seattle again and Madelyn can not be in Anacortes until it is finished.
Ever since that Dec 28th appointment we feel as though a major weight has been lifted off our shoulders. It is amazing how much better we are all feeling. I haven't cried once since that day... and that cry was due to such overwhelming happiness. IF she has to go through all this SHIT (pardon my french) we are so HAPPY it is working.
My parents came down to be with Phia during MJs sedation appointment yesterday. This was very helpful for us and much more fun for Phia. She went swinging at the park and I'm sure got treats we don't know about :) Plus this enabled Peter and I to take Madelyn out to lunch, just the three of us, after the appointment. That was nice. They came the night before so Peter and I were able to go out with friends. I have a group of friends I have known for years down here from my Chihuly Studio days. We got together at Senor Moose for margaritas and fabulous mexican. It was so nice to laugh and see them all. They are just like family.
Madelyn has been drawing and coloring an amazing amount. She always loved to do crafts and color, but my oh my. I think it is her own source of therapy. And this is also very Madelyn. Leave it to her to develop her own ways of coping and not have someone else tell her what would be good for her. Most of the people in these pictures are Lucas, Beckett, Auntie Jill and Uncle Emmett. I guess we need to arrange another visit with them soon :) The thing that I notice the most about these pictures, and all the pictures she draws, is that they include people and they include lots of happy faces (on people, on suns, on stars, on moons). I am so grateful and absolutely delighted by this.
If all continues to go well with her treatments AND she doesn't get sick, for the next two phases of treatment we should be able to be in Anacortes. She started the Consolidation phase of her treatment yesterday with a Lumbar Puncture placing chemotherapy in her Central Nervous System and chemotherapy via her port. She also started an oral chemotherapy that Peter and I give her everyday. She is still hurting a little today and we want to see how she reacts to the new chemo, but we are hoping to bring her home tomorrow Wednesday returning most likely on Sunday. We are still waiting for our treatment schedule for the month. She has to have weekly Lumbar Punctures...
Her counts were FABULOUS yesterday: Hem 33 Platelet 319 WBC 7.1 and ANC 2031
A note to all our Anacortes much LOVED ones. In order for Madelyn to be home, it is very important that she not get sick. We can't wait to see everyone, but if anyone even feels "a little something funny in their throat" please stay away until you are sure you feel better. Getting sick is not only hard because her immune system isn't working right, but also because it sets back her chemotherapy schedule. And something like Chicken Pox is actually life threatening for MJ right now....
We will need to be in Seattle 2-3 days a week for chemotherapy and doctor's visits but the rest of the time we can be in Anacortes. I'm so glad we have this apartment to come to for our Seattle days. It really has been perfect. We have decorated it with lots of drawings and crafts and does feel like a mini-Kuhnlein-home. We are just so grateful that this complete disconnection from home does not have to continue. During the last very intense phase of therapy (two months) we will have to be in Seattle again and Madelyn can not be in Anacortes until it is finished.
Ever since that Dec 28th appointment we feel as though a major weight has been lifted off our shoulders. It is amazing how much better we are all feeling. I haven't cried once since that day... and that cry was due to such overwhelming happiness. IF she has to go through all this SHIT (pardon my french) we are so HAPPY it is working.
My parents came down to be with Phia during MJs sedation appointment yesterday. This was very helpful for us and much more fun for Phia. She went swinging at the park and I'm sure got treats we don't know about :) Plus this enabled Peter and I to take Madelyn out to lunch, just the three of us, after the appointment. That was nice. They came the night before so Peter and I were able to go out with friends. I have a group of friends I have known for years down here from my Chihuly Studio days. We got together at Senor Moose for margaritas and fabulous mexican. It was so nice to laugh and see them all. They are just like family.
Madelyn has been drawing and coloring an amazing amount. She always loved to do crafts and color, but my oh my. I think it is her own source of therapy. And this is also very Madelyn. Leave it to her to develop her own ways of coping and not have someone else tell her what would be good for her. Most of the people in these pictures are Lucas, Beckett, Auntie Jill and Uncle Emmett. I guess we need to arrange another visit with them soon :) The thing that I notice the most about these pictures, and all the pictures she draws, is that they include people and they include lots of happy faces (on people, on suns, on stars, on moons). I am so grateful and absolutely delighted by this.
Sunday, January 2, 2011
SLEEP!!
Madelyn slept all night last night!!!!! Wooooo Hooooo!!! She is at only .5 mg of the steroids (from 4mg a day originally) and it made a big difference. She only got up twice to go to the bathroom. We are ALL in happy zone today!!
Saturday, January 1, 2011
Happy New Year
Happy New Year everybody!
We hope you all are enjoying your first day of 2011.
The Kuhnlein family had a wonderful last two days. Madelyn and Sophia's best buddies, Alaina and Avi, brought their parents down to Seattle for a visit. Jeff Dawson and Amber Fowler drove their boat down from Anacortes and we all spent the night on the water together. It was sooooo good for all of us.
We haven't heard Madelyn laugh that much in a long time. Alaina is so caring towards Madelyn. Even when MJ's tired and a little grumpy, Alaina is very loving. Imagine how difficult it is to understand at 4 years old that your best buddy has cancer.... Us grown-ups did a lot of good laughing too. Including a cheerleader-worthy kick by Peter, after winning a rambunctious round of cards, followed by spectacular fall on his butt. Avi and Phia... well they were constantly being their 2 year old rascal selves together and loving it. Phia misses her Avi and Ashley so much.
Jeff and Amber moored the boat in Elliott Bay with the most spectacular view of downtown Seattle including the Space Needle. At midnight we sat in the boat's living room and watched the fireworks. The girls had us up waaaaayyyyyy too early the next morning, but it was worth seeing the city scape, Mt Rainer and the Olympics at sunrise. Simply gorgeous. And get this - WE FORGOT OUR CAMERA. I just can not believe we did that! This morning Jeff took us on a cruise around the Bay and then we docked near the aquarium and had some fish, octopus, sea star and seal time.
So good to have some old fashioned fun. Thank you Fowler-Dawson family. We love you!
We hope you all are enjoying your first day of 2011.
The Kuhnlein family had a wonderful last two days. Madelyn and Sophia's best buddies, Alaina and Avi, brought their parents down to Seattle for a visit. Jeff Dawson and Amber Fowler drove their boat down from Anacortes and we all spent the night on the water together. It was sooooo good for all of us.
We haven't heard Madelyn laugh that much in a long time. Alaina is so caring towards Madelyn. Even when MJ's tired and a little grumpy, Alaina is very loving. Imagine how difficult it is to understand at 4 years old that your best buddy has cancer.... Us grown-ups did a lot of good laughing too. Including a cheerleader-worthy kick by Peter, after winning a rambunctious round of cards, followed by spectacular fall on his butt. Avi and Phia... well they were constantly being their 2 year old rascal selves together and loving it. Phia misses her Avi and Ashley so much.
Jeff and Amber moored the boat in Elliott Bay with the most spectacular view of downtown Seattle including the Space Needle. At midnight we sat in the boat's living room and watched the fireworks. The girls had us up waaaaayyyyyy too early the next morning, but it was worth seeing the city scape, Mt Rainer and the Olympics at sunrise. Simply gorgeous. And get this - WE FORGOT OUR CAMERA. I just can not believe we did that! This morning Jeff took us on a cruise around the Bay and then we docked near the aquarium and had some fish, octopus, sea star and seal time.
So good to have some old fashioned fun. Thank you Fowler-Dawson family. We love you!
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