Madelyn was not able to eat after 3:30am this morning due to her lumbar puncture procedure. So the morning was rough. She is on steroids now which make her very hungry - not eating is an issue. The LP or spinal tap put chemo in her central nervous system and she also had PEG shots (also chemo) in her leg muscles. She had PEG one other time, when we were in the hospital at diagnoses. I remember her having a mild allergic reaction to something while in the hospital, but can't say for sure what it was to. It was a very whirly, foggy, cry-infused time.
Today, however, she most definitely had an allergic reaction to the PEG. It was scary. The nurses and doctors were very nervous. She had blotchy hives that showed up randomly in different places. First on the chest and then they would go away and show up on her face. Then go away and show up on her neck, etc, etc. Then she started to not want to drink/swallow anything and complained of her throat hurting. Then her mouth started to swell and she was extremely overheated.
It took three antihistamine drugs to get it under control. She actually moved her body and became more alert around 2 or 3pm. She was, literally, in the same body position for hours. Around that time she also started talking more, needed to go to the bathroom and wanted to eat something. All good signs of feeling better. Finally... again, THREE drugs later.
Peter took Phia to the playroom after MJ started having the allergic reaction and then home. I stayed with her all day. She was admitted to the hospital tonight for continued observation. The PEG chemo stays in the system a very long time and they want to keep her on regular, around the clock, staggered doses of the Benedryl and Zantac.
Observation during the day took placed in the Oncology Outpatient Clinic - where we are usually treated - in the infusion area. This is still at Children's Hospital, just a different area of the hospital then when you are actually admitted. So tonight MJ and I are in the Seattle Cancer Care Alliance inpatient unit.
We got to our room at 5:00pm and Peter sent me to dinner. When I returned from the cafeteria, Madelyn's food arrived and the girls sat in the bed together eating their dinner. It was cute. Immediately following dinner MJ said it was time for bed. She was asleep by 6:45pm... passed out is probably a better term for it. Big day and Benedryl. She is snuggled up right now in her regular clothes (I forgot her PJs), has her favorite Bunnies by the Bay blanket and her quilt from Grandma Rosie. I love that most kids do not wear hospital gowns on this unit; as much that can be NORMAL here, the better.
More tomorrow...
Thursday, March 31, 2011
Wednesday, March 30, 2011
March 30
Fairly good day. Madelyn had times of pain today. We gave her pain medication at 11am and then she took a good nap. We also gave her some around 5pm this evening. She ate and drank well all day though and asked to go to bed at 7:15pm.
Tomorrow another big chemo day. We will be into the hospital at 9:00am and she should be sedated by 9:30am. More tomorrow...
Tomorrow another big chemo day. We will be into the hospital at 9:00am and she should be sedated by 9:30am. More tomorrow...
Tuesday, March 29, 2011
March 29
Madelyn had a good day. Really good.
She went to bed last night at 7pm and didn’t wake up until 7:15am . We gave her an anti-nausea med (Zofran) at 7:30am with the battery of required meds. But that was the last dose. She actually had a pretty normal hunger level today, was tired when she was supposed to be tonight and was happy all day. She didn’t even have a nap!
The only thing that was particularly trying for Mom and Dad was the constant bickering between MJ and Phia. I was this close to throwing my own temper tantrum before I realized I just hadn’t had enough caffeine. After a double shot vanilla latte at Uptown Espresso (next to Glazers, the pro camera shop in Seattle), my 2 year old tendencies vanished and my inner 36 year old re-emerged… The “I don’t care that my children are rolling around laughing, taking their shoes off and playing horsies in your store” calm came over me.
So yes. We went to the camera shop first thing this morning. Peter picked up a tricked out point-n-shoot camera for his trips to the mountains and I rented the 85mm f1.2 lens. I am already deeply saddened that it must be returned by 10am tomorrow. I have been drooling after this lens for about four years. We then hit Walgrens and picked up some equally awesome pink and purple (of course!) cameras for the girls. We went to the Quad on UW campus where the cherry blossoms are getting ready to be in full bloom. We had a family photography expedition and snack picnic at my alma mater. Hard to believe I graduated from UW 15 years ago…
So, fantastically, nothing to report other than a typical five year old day for Madelyn. She did crafts, swung on the swings (Daddy can do double under dogs you know), played horsies and fought with sister. Wonderfully typical.
Madelyn's med list for this week! Crazy, eh? Hard to keep it all organized...
Taking photos with their new cameras.
"Where does the picture go Daddy?" and a photog in the making. Good stance MJ.
My funny girls.
My white hair matches the white blossoms.
Ok, so this was freakin funny. This group of Japanese students were visiting and wanted to have their picture taken with Madelyn. Only because they thought she was cute and probably a typical American kid. Little did they know she is actually not typical, but has a rare childhood disease. They took a group photo with Madelyn plus individual photos - each one with MJ.
My honey. He's cute, isn't he!
I studied Anthropology in University. The Anthro department is housed in the oldest building on campus. There is a new building right next to it now (not there when I was at UW back in the olden days) that is ultra modern and just super cool. Wonderful space, lines, light and interest. Awesome dichotomy next to ol' Denny Hall. Loved it.
Monday, March 28, 2011
Mar 28 / day 1 of Delayed Intensification
Phew. It was a busy week. Organizing the studio to leave, trying to get Kimee up to speed on KP Studios, preparing for Madelyn's birthday bash and packing. Actually, to be truthful, we spent all week trying to get loose ends tied up at KP Studios and working with Kimee. On Saturday, the DAY of Madelyn's party, is when I actually prepared for the party and on Sunday, the DAY we left, I cleaned the studio from the party, cleaned the house, did four loads of laundry and packed to leave. It was a crazy weekend.
Madelyn had a wonderful birthday/bon voyage party! We had a dance party with tattoo and piercing station (needle free), disco ball, a "bar" with wine (sparking cider) and cocktails (punch) and lots of giggling, dancing, presents, cake and silliness. All my sisters came with "the cousin pack" (except Lucas who made the Babe Ruth Majors at 9 years old and had practice) and all of MJs good buddies were there. The four best friends - Madelyn and Phia and Avi and Alaina Fowler - had matching bright (and I mean bright) pink tutu dresses. Phia said they were all Fancy Nancy.
Madelyn was so happy. Peter and I were, therefore, so happy. She didn't go to bed until 9:30pm that night and was tear free until the end. Her cousins Courtney and Kelsey had a sleep over and she fell asleep with a big ol' smile on her face.Thank you - all you fabulous, fantastic, much loved family and friends - you made this night pure awesome-ness for MJ. She was telling all the doctors and nurses about it today... between Dora episodes.
So we arrived in Seattle late (by 5 and 2 year old standards) last night at 7pm. Girls went straight to bed and I unpacked most of the things. We already had the apartment stocked with necessities, but the girls both went through a growth spurt one day (seriously) and we had to bring all new clothes for them. We also needed some beefing up on miscellaneous supplies. For example, we neeeeeded to bring horse-ies. We could not get through the next two months in Seattle without our horse supply and the new stable from Grandma Harriet and Grandpa Urs. And then, of course, there is the rock climbing gear for Peter to go to Stone Gardens. And I am working on a project using encaustic on my personal photographs so heat guns, wax, photos, etc had to be packed. So you see, lots of important packing :) Had to put the Thule rack on the top of the station wagon...
So here we are in Seattle for two months. Hard to believe. When I climbed in the car yesterday I sooooo did not want to go. Each time I arrive in our little apartment though I realize that home is wherever we are, together. I feel happy and at home here - because Peter, Madelyn and Sophia are here. Certainly, I would prefer to be in Anacortes in our real home, with our peeps and family close by, with our studio, with our routines, our Ashley, our tulips, our kitty, our beach, etc, etc. But the three loves-of-my-life are here with me and that makes it feel right.
Sometimes I think we are crazy - all four of us going to Madelyn's appointments together. Today we were at the hospital from 9am until 2pm. It just feels right to Peter and I; that we go through this as a family. MJ is bearing the brunt of the physical and mental stress, Peter and I are sleepless and anxious and worried and Phia talks about things like medicines, chemo and hospitals, but it feels right to all be together.
Day 1 of Delayed Intensification actually went well. Madelyn's counts were relatively good, ANC is low but high enough to start this part of therapy on time. The doctor's said the ANC was probably lower because of the virus she had a couple weeks ago. Chemo knocks her counts down and she will be getting a lot of it over the next two months. So it would have been better for her if she had started higher. She is under 1,000 so no public (fun) places like aquarium and Pacific Science Center unless they climb back up.
Hem 38.4 Plat 291 WBC 3.0 ANC 807
She started a new, typically more difficult, chemotherapy drug today called Doxorubicin. She also had the Vincristine (the one that causes the neropathy in her legs). They pre-dosed her with Zofran (anti-nausea med) and gave her some fluids via IV. The clinic was super busy today so all our appointments ran late. We didn't get back to the apartment until 2pm. Madelyn felt great the whole rest of the day and evening. She was just a little... spacey. She ran around the lawn in front of the apartments, climbed trees with Daddy and swung on the swing set here at the apartment complex. She had a little pee accident while climbing a tree due to the extra fluid and because she was having so much fun.
I made a grocery run with my bike and our kid-trailer on the Burke Gilman trail. Nice to get a little exercise in after all that sitting today. We had a great dinner as a family tonight. The girls favorite spices are Indian, so I made tandori chicken with yogurt and rice with a Swiss chard and celery side dish.
Madelyn also started, the dreaded, Dexamethazone tonight. Steroids. Read: cranky, irritable, HUNGRY 24/7 and insomnia. Luckily she only has to be on it for seven days this time (in December it was for a whole month!) and then off for two weeks. Then on again, etc. It will hopefully be easier this time.... our fingers are double crossed.
Overall Delayed Intensification will be her hardest round of treatment and the doctors say Anacortes is too far away. So we are here, in Seattle, for April and May. One of us will be returning to Anacortes weekly for work and Kimee will be helping immensely keeping KP Studios on the go.
Madelyn will have another big chemo day this Thursday. She will receive chemotherapy to destroy leukemia cells that could spread to the central nervous system (the brain and spinal cord). This chemotherapy is injected right into the spinal fluid using a lumbar puncture (spinal tap). She has had many of these and will, again, be sedated. They have organized it so that, while sedated, she will also receive chemotherapy injected into her leg muscles. She was supposed to have that done today, but they said for her comfort they would move these big shots to Thursday so she could be asleep.
Friday she has physical therapy and then on Saturday we are meeting with the Deborah Nelson. She is running in the Paris Marathon on April 10 in honor of Madelyn and in memory of my Grandmother who passed away from Leukemia in June. She and her teammates are members of The Leukemia & Lymphoma Society. My Mom will be coming with us.
So, a busy week. Lots more posts to come...
Madelyn had a wonderful birthday/bon voyage party! We had a dance party with tattoo and piercing station (needle free), disco ball, a "bar" with wine (sparking cider) and cocktails (punch) and lots of giggling, dancing, presents, cake and silliness. All my sisters came with "the cousin pack" (except Lucas who made the Babe Ruth Majors at 9 years old and had practice) and all of MJs good buddies were there. The four best friends - Madelyn and Phia and Avi and Alaina Fowler - had matching bright (and I mean bright) pink tutu dresses. Phia said they were all Fancy Nancy.
Madelyn was so happy. Peter and I were, therefore, so happy. She didn't go to bed until 9:30pm that night and was tear free until the end. Her cousins Courtney and Kelsey had a sleep over and she fell asleep with a big ol' smile on her face.Thank you - all you fabulous, fantastic, much loved family and friends - you made this night pure awesome-ness for MJ. She was telling all the doctors and nurses about it today... between Dora episodes.
So we arrived in Seattle late (by 5 and 2 year old standards) last night at 7pm. Girls went straight to bed and I unpacked most of the things. We already had the apartment stocked with necessities, but the girls both went through a growth spurt one day (seriously) and we had to bring all new clothes for them. We also needed some beefing up on miscellaneous supplies. For example, we neeeeeded to bring horse-ies. We could not get through the next two months in Seattle without our horse supply and the new stable from Grandma Harriet and Grandpa Urs. And then, of course, there is the rock climbing gear for Peter to go to Stone Gardens. And I am working on a project using encaustic on my personal photographs so heat guns, wax, photos, etc had to be packed. So you see, lots of important packing :) Had to put the Thule rack on the top of the station wagon...
So here we are in Seattle for two months. Hard to believe. When I climbed in the car yesterday I sooooo did not want to go. Each time I arrive in our little apartment though I realize that home is wherever we are, together. I feel happy and at home here - because Peter, Madelyn and Sophia are here. Certainly, I would prefer to be in Anacortes in our real home, with our peeps and family close by, with our studio, with our routines, our Ashley, our tulips, our kitty, our beach, etc, etc. But the three loves-of-my-life are here with me and that makes it feel right.
Sometimes I think we are crazy - all four of us going to Madelyn's appointments together. Today we were at the hospital from 9am until 2pm. It just feels right to Peter and I; that we go through this as a family. MJ is bearing the brunt of the physical and mental stress, Peter and I are sleepless and anxious and worried and Phia talks about things like medicines, chemo and hospitals, but it feels right to all be together.
Day 1 of Delayed Intensification actually went well. Madelyn's counts were relatively good, ANC is low but high enough to start this part of therapy on time. The doctor's said the ANC was probably lower because of the virus she had a couple weeks ago. Chemo knocks her counts down and she will be getting a lot of it over the next two months. So it would have been better for her if she had started higher. She is under 1,000 so no public (fun) places like aquarium and Pacific Science Center unless they climb back up.
Hem 38.4 Plat 291 WBC 3.0 ANC 807
She started a new, typically more difficult, chemotherapy drug today called Doxorubicin. She also had the Vincristine (the one that causes the neropathy in her legs). They pre-dosed her with Zofran (anti-nausea med) and gave her some fluids via IV. The clinic was super busy today so all our appointments ran late. We didn't get back to the apartment until 2pm. Madelyn felt great the whole rest of the day and evening. She was just a little... spacey. She ran around the lawn in front of the apartments, climbed trees with Daddy and swung on the swing set here at the apartment complex. She had a little pee accident while climbing a tree due to the extra fluid and because she was having so much fun.
I made a grocery run with my bike and our kid-trailer on the Burke Gilman trail. Nice to get a little exercise in after all that sitting today. We had a great dinner as a family tonight. The girls favorite spices are Indian, so I made tandori chicken with yogurt and rice with a Swiss chard and celery side dish.
Madelyn also started, the dreaded, Dexamethazone tonight. Steroids. Read: cranky, irritable, HUNGRY 24/7 and insomnia. Luckily she only has to be on it for seven days this time (in December it was for a whole month!) and then off for two weeks. Then on again, etc. It will hopefully be easier this time.... our fingers are double crossed.
Overall Delayed Intensification will be her hardest round of treatment and the doctors say Anacortes is too far away. So we are here, in Seattle, for April and May. One of us will be returning to Anacortes weekly for work and Kimee will be helping immensely keeping KP Studios on the go.
Madelyn will have another big chemo day this Thursday. She will receive chemotherapy to destroy leukemia cells that could spread to the central nervous system (the brain and spinal cord). This chemotherapy is injected right into the spinal fluid using a lumbar puncture (spinal tap). She has had many of these and will, again, be sedated. They have organized it so that, while sedated, she will also receive chemotherapy injected into her leg muscles. She was supposed to have that done today, but they said for her comfort they would move these big shots to Thursday so she could be asleep.
Friday she has physical therapy and then on Saturday we are meeting with the Deborah Nelson. She is running in the Paris Marathon on April 10 in honor of Madelyn and in memory of my Grandmother who passed away from Leukemia in June. She and her teammates are members of The Leukemia & Lymphoma Society. My Mom will be coming with us.
So, a busy week. Lots more posts to come...
Saturday, March 19, 2011
March 19
This morning Madelyn woke up asking for toast! Hooray!!!! All week she has NOT been feeling good first thing in the morning because her Zofran wore off during the night. I think we will try to be Zofran free today!
She had a wonderful birthday day, still nauseated, but the six hour intervals on the Zofran helped her enjoy the day. I will post pictures soon. I'm glad we scheduled her birthday party for March 26th! She will be feeling great by then and it is nice way to send her down to Seattle. The 27th is the day we head to Seattle for two months... it has come much too quickly...
She had a wonderful birthday day, still nauseated, but the six hour intervals on the Zofran helped her enjoy the day. I will post pictures soon. I'm glad we scheduled her birthday party for March 26th! She will be feeling great by then and it is nice way to send her down to Seattle. The 27th is the day we head to Seattle for two months... it has come much too quickly...
Wednesday, March 16, 2011
March 16
Well, Madelyn is still not feeling well... we are on day six. Poor thing. She is quite nauseated and vomited more yesterday. I am so sad that she is feeling this way in her last two weeks at home and her birthday week. Peter, Sophia and l are all feeling well; so basically she is just having troubles due to the stomach bug compounded by the chemo. I called the Hem/Onc clinic yesterday at Children's. Our doctor said the only action we or they can take is supportive. Unless she develops a fever there is nothing to do but weather through it. Luckily she is continuing to drink like a champ and is not dehydrated. The doctor did recommend reducing her Zofran (anit-nausea med) frequency from every 8 hours to every 6 hours. Hopefully this will help her...
She went to her Physical Therapy appointment today with Amy Harrington. Amy said she still seems quite strong - no significant troubles with neropathy - but obviously she doesn't have a lot of energy. She hasn't eaten significantly for 6 days.
It is so hard, when Madelyn is not feeling good for us (especially me) to function normally. This bout of nausea is bringing it all home again. Our little girl is sick. She has cancer.
The last few weeks it has been somewhat easy to push it out of our mind. She has been feeling good and acting like, well, Madelyn. I keep reminding myself that this girl of ours is resilient, strong and energetic. She will come through it. She is fighting and winning. This week, I guess, is preparing us for the next two months of battle. We are expecting more discomforting side effects this April and May. The doctor indicated nausea and vomiting, low blood counts, mouth sores, troubles with eating, hair loss and possible hospitalization.
I am so anxious for her. All I want to do is sit by her side and try to make it better. I can't do or think of anything else... at least not well. Last night Peter and I had a horrible time sleeping. And... the mistakes at work! Oh my goodness... I have forgotten to pay the WA State taxes, to order reprints and fill out our state annual reports. We gave Kimee (who's helping us at the studio soon) a bunch of images to design an album with. They were all images that were supposed to be REMOVED from the album, not included. Are you kidding me?! How can we be doing all this?
By the way, before I forget, I wanted to mention another blood drive going on in Anacortes:
April 7th 12noon-6pm at the Westminster Presbyterian.
I know you all love seeing images. So ... because I couldn't concentrate today... I finally went through our pictures from our trip to Switzerland last summer, pre-diagnosis. A month before this trip Madelyn had her first Leukemia symptoms. At the time they were very painful and mysterious leg pains that included two ER visits and her unable to walk. They eventually subsided, but never explained and we just moved on. "Kid stuff." Those pains finally made sense in November with diagnoses.
Thought I'd share. I love remembering these normal, fun, family times.
"Hiking" in the Bernese Oberland. Peter got a work out. Those of you who know him well, know that he LOVES this...
Close to our rented apartment.
Waving to Daddy and MJ from our apartment steps. We are in the high mountains here.
In Rüti (near Zürich) at Christian and Claudia's home. Playing in the sand box.
Isn't she adorable. Cousin Sarah.
A little Pingu time (great for kids that don't have a language in common) while we make dinner. They are all super tired after playing all day in the sprinkler.
The Swiss and US Kühnlein's together.
Peter's cousin Christian with his wife Claudia and cuties Sarah and Aaron.
Love it.
The Kühnlein home in Küsnacht (suburb of Zürich). This is where Peter's Dad, Urs, grew up.
Playing soccer with Uncle Heinz, Urs' brother.
The Küsnacht home has beautiful, wild gardens...
Looking out of the gondola on our ride up to a little town called Mürren in the mountains. This is where were rented an apartment. The girls LOVED this ride.
A little stop off the train in Bern for lunch and a little playground time.
Clowning around in the train.
Transit between trains.
On the long plane ride. They were like this almost the whole 10 hours.
Sunday, March 13, 2011
March 13
Well... scratch what I said about it just being the chemotherapy causing Madelyn's vomiting. We have a stomach bug. Ugh. I woke up last night throwing up and continued throughout the night. I spent the day in bed and Peter spent the day helping Madelyn. She is still throwing up and not feeling good. Poor girl. Stomach bug plus chemotherapy = not fun.
Sophia spent the day with my parents which was better for her than here. Now we are hoping that she and my parents don't get the "bug." I can't believe we have had a stomach bug / flu twice this year! Seems years since we've had one. Luckily, Madelyn is not showing any signs of a fever. Thank goodness.
I just now went to the medicine cabinet (for myself). I have broken out with itchy hives. I was debating taking a second Benadryl on top of the Tylenol I took for the aches. Gosh, can my body handle both Tylenol and two Benadryl pills? Maybe I'll overdose! And then I thought, if my four year old can handle Vincristine, Methotrexate, two kinds of anitbiotics, a proton pump inhibitor, Zofran and Oxycodone, well probably my 36 year old body can handle some Tylenol and Benadryl.
Sophia spent the day with my parents which was better for her than here. Now we are hoping that she and my parents don't get the "bug." I can't believe we have had a stomach bug / flu twice this year! Seems years since we've had one. Luckily, Madelyn is not showing any signs of a fever. Thank goodness.
I just now went to the medicine cabinet (for myself). I have broken out with itchy hives. I was debating taking a second Benadryl on top of the Tylenol I took for the aches. Gosh, can my body handle both Tylenol and two Benadryl pills? Maybe I'll overdose! And then I thought, if my four year old can handle Vincristine, Methotrexate, two kinds of anitbiotics, a proton pump inhibitor, Zofran and Oxycodone, well probably my 36 year old body can handle some Tylenol and Benadryl.
Saturday, March 12, 2011
March 12
Madelyn slept through the night and only woke up for Zofran (anti-nausea med) at 5:00am (it was due to wear off at 2:30am). She slept another hour after that. She has still been nauseated this morning, but no longer vomitting. We have concluded it was the Methotrexate. She is having classic response to the chemo.
So we made it home to Anacortes about 12noon today. She luckily slept the whole way home. Phia chatted, screamed, sang and had imaginary talking games with her kitty the whole way.
MJ has eaten a little today. A few bites of corn flakes, some celery and carrots and now snacking on pop corn. She has continued to drink like a champ. About 8 oz every 1-2 hours. This is important to "flush" the chemo out of her system. This is the reason she sits for fluids before receiving the chemotherapy.
She is having a little bit of trouble walking today and feels dizzy.
Today is day 1 of our last 14 days at home before we have to be in Seattle full-time again (April-May).
This week is Madelyn's Birthday! Our little clover will be turning five years old on Thursday - Saint Patricks Day! If you would like to do something for her birthday please consider giving blood and then sending her a card to let her know about it. Just last month in Seattle, the Puget Sound Blood Bank was running low. This effects the little cuties sitting in hospital beds at Seattle Children's. MJ understands how blood given by loving people all over western Washington has helped her get better. This will make her happy.
If you are in Anacortes:
Island Hospital is having a blood drive TOMORROW, Monday March 14th. Call 299-1309 or email czaugra@islandhospital.org.
If you can, send her a note or card to let her know about your donation. Email me if you need our address: lisa@kuhnlein.com.
So we made it home to Anacortes about 12noon today. She luckily slept the whole way home. Phia chatted, screamed, sang and had imaginary talking games with her kitty the whole way.
MJ has eaten a little today. A few bites of corn flakes, some celery and carrots and now snacking on pop corn. She has continued to drink like a champ. About 8 oz every 1-2 hours. This is important to "flush" the chemo out of her system. This is the reason she sits for fluids before receiving the chemotherapy.
She is having a little bit of trouble walking today and feels dizzy.
Today is day 1 of our last 14 days at home before we have to be in Seattle full-time again (April-May).
This week is Madelyn's Birthday! Our little clover will be turning five years old on Thursday - Saint Patricks Day! If you would like to do something for her birthday please consider giving blood and then sending her a card to let her know about it. Just last month in Seattle, the Puget Sound Blood Bank was running low. This effects the little cuties sitting in hospital beds at Seattle Children's. MJ understands how blood given by loving people all over western Washington has helped her get better. This will make her happy.
If you are in Anacortes:
Island Hospital is having a blood drive TOMORROW, Monday March 14th. Call 299-1309 or email czaugra@islandhospital.org.
If you can, send her a note or card to let her know about your donation. Email me if you need our address: lisa@kuhnlein.com.
Friday, March 11, 2011
March 11
Madelyn's counts were awesome today. Simply awesome.
Hem 37.1 Plat 307 WBC 4.7 ANC 2721
But... the day has been really hard on MJ. She has been throwing up all day, starting as soon as the Methotrexate infusion finished.
We found out yesterday that she did, indeed, have a UTI. It is a type of UTI that is resistant to the Bactrim antibiotic she takes weekly. So now she is on two different antibiotics.
Madelyn wouldn't eat anything this morning and she started complaining that her belly hurt right after being accessed. So she wasn't feeling well before the chemo. We are not quite sure what is going on with the throwing up. Obviously, the Methotrexate makes kids nauseated and it is not unusual to vomit. MJ just hasn't ever had this problem before. Her dosage did increase today, but the amount didn't seem significant enough to warrant this much change. We are thinking she may have a little stomach bug or possibly stomach irritation from the antibiotics and then on top of that there was the Methotrexate. She still hasn't had anything to eat. She has been throwing up water and dry-heaving all day.
Needless to say, we did not return home to Anacortes. We are at the Seattle apartment tonight and we are, again, so thankful we have this home-away-from-home.
Will update tomorrow...
Hem 37.1 Plat 307 WBC 4.7 ANC 2721
But... the day has been really hard on MJ. She has been throwing up all day, starting as soon as the Methotrexate infusion finished.
We found out yesterday that she did, indeed, have a UTI. It is a type of UTI that is resistant to the Bactrim antibiotic she takes weekly. So now she is on two different antibiotics.
Madelyn wouldn't eat anything this morning and she started complaining that her belly hurt right after being accessed. So she wasn't feeling well before the chemo. We are not quite sure what is going on with the throwing up. Obviously, the Methotrexate makes kids nauseated and it is not unusual to vomit. MJ just hasn't ever had this problem before. Her dosage did increase today, but the amount didn't seem significant enough to warrant this much change. We are thinking she may have a little stomach bug or possibly stomach irritation from the antibiotics and then on top of that there was the Methotrexate. She still hasn't had anything to eat. She has been throwing up water and dry-heaving all day.
Needless to say, we did not return home to Anacortes. We are at the Seattle apartment tonight and we are, again, so thankful we have this home-away-from-home.
Will update tomorrow...
Tuesday, March 8, 2011
March 8th
I write tonight from pink, fuchsia, blue and green. From corduroy pillows of pink, unicorn pillow-pets and poka-dots. From mounds of kitties, doggies, bears and owls. I am sleeping in Madelyn's room tonight. She is sleeping in my bed with Daddy. Peter slept here last night.
Madelyn has been absolutely fantastic the last couple of weeks! She is feeling good, acting like herself, having fun, growing and thriving. As a four, almost five, year old should be. No more temper tantrums or overt anxiety. She's had a wonderful week of sleep overs with Grandma and Grandpa, fun days with Ashley, learning mornings with Tina at San Juan Montessori and exercise mornings with Amy at Physical Therapy. Sophia and Madelyn have been engaged, amusing and entertaining each other. I thought hearing your child laugh was the best thing in the world. Well, actually, the best thing is to hear your children laughing together - without you.
Madelyn has had an increase in bad dreams lately. They are waking her up and, therefore, waking us up as well. She is also scared of the dark and sleeps with the lights on. I have decided to not try and effect how she copes. If she wants to be with us because she has bad dreams, so be it. If she wants all the lights on while she sleeps, so be it. It won't last forever and it gives her some control in her life where she has so little.
Last night she woke up from a bad dream and had to go potty. She wanted me to come with her so we held hands down the hall and she climbed on the toilet. She immediately started to fiercely cry that it was hurting.
First thing this morning I called the Hem/Onc clinic at Children's Hospital suspecting a bladder infection. Luckily, they said we could do the testing here in Anacortes with our pediatrician. Dr. Jeanne Olmstead and her nurse Patsy are so wonderful. They said to just come in right away and they would work us in. As soon as we walked in the door, their MA ushered us to the back so we did not have to sit in the waiting room. Pasty read Madelyn a book as I walked back to the front and checked in. (As you can imagine, the waiting room at a doctors office is GERM Central so they got us away from exposure). We are still waiting to hear the results of the UTI test, but Dr. Olmstead spoke with our ARNP at Children's and they decide to put Madelyn on some precautionary antibiotics until the test results come back.
And get this! Fabulous. The antibiotics came in gel caps. Not a major thing for most people, but for us... WoooHooo! No cutting the tablets and shoving them into gel caps. Doesn't sound like a big deal, I know, but some of those pills don't cut so well and it can be a big pain in the you-know-what-end. It was cute though... I had the nurse, the MA and the pharmacist double check that I indeed wanted pills and not liquid. "Yes, she likes to swallow it with gel caps". I am just as proud of it as she is.
Lastly, I want you all to know how astounding Madelyn is. She was whammed by chemo on Wednesday, but I swear you would never know it. She had two days of some nausea and a little pain, but she was happy and her inexhaustible energy for life continued. I swear that is not just a Mom statement! Ask Ashley, she knows. Ashley, Peter and I watch her everyday and are amazed by her. She still wants to run, play horses, eat ice cream, read books, ride bikes, look through telescopes, take baths, have dance parties in our living room, laugh, paint, draw, have Daddy play Tickle Monster and put on Dora tatoos.
We leave for Seattle on Thursday this week. Madelyn's appointments are on Friday. I will update more this weekend...
Madelyn has been absolutely fantastic the last couple of weeks! She is feeling good, acting like herself, having fun, growing and thriving. As a four, almost five, year old should be. No more temper tantrums or overt anxiety. She's had a wonderful week of sleep overs with Grandma and Grandpa, fun days with Ashley, learning mornings with Tina at San Juan Montessori and exercise mornings with Amy at Physical Therapy. Sophia and Madelyn have been engaged, amusing and entertaining each other. I thought hearing your child laugh was the best thing in the world. Well, actually, the best thing is to hear your children laughing together - without you.
Madelyn has had an increase in bad dreams lately. They are waking her up and, therefore, waking us up as well. She is also scared of the dark and sleeps with the lights on. I have decided to not try and effect how she copes. If she wants to be with us because she has bad dreams, so be it. If she wants all the lights on while she sleeps, so be it. It won't last forever and it gives her some control in her life where she has so little.
Last night she woke up from a bad dream and had to go potty. She wanted me to come with her so we held hands down the hall and she climbed on the toilet. She immediately started to fiercely cry that it was hurting.
First thing this morning I called the Hem/Onc clinic at Children's Hospital suspecting a bladder infection. Luckily, they said we could do the testing here in Anacortes with our pediatrician. Dr. Jeanne Olmstead and her nurse Patsy are so wonderful. They said to just come in right away and they would work us in. As soon as we walked in the door, their MA ushered us to the back so we did not have to sit in the waiting room. Pasty read Madelyn a book as I walked back to the front and checked in. (As you can imagine, the waiting room at a doctors office is GERM Central so they got us away from exposure). We are still waiting to hear the results of the UTI test, but Dr. Olmstead spoke with our ARNP at Children's and they decide to put Madelyn on some precautionary antibiotics until the test results come back.
And get this! Fabulous. The antibiotics came in gel caps. Not a major thing for most people, but for us... WoooHooo! No cutting the tablets and shoving them into gel caps. Doesn't sound like a big deal, I know, but some of those pills don't cut so well and it can be a big pain in the you-know-what-end. It was cute though... I had the nurse, the MA and the pharmacist double check that I indeed wanted pills and not liquid. "Yes, she likes to swallow it with gel caps". I am just as proud of it as she is.
Lastly, I want you all to know how astounding Madelyn is. She was whammed by chemo on Wednesday, but I swear you would never know it. She had two days of some nausea and a little pain, but she was happy and her inexhaustible energy for life continued. I swear that is not just a Mom statement! Ask Ashley, she knows. Ashley, Peter and I watch her everyday and are amazed by her. She still wants to run, play horses, eat ice cream, read books, ride bikes, look through telescopes, take baths, have dance parties in our living room, laugh, paint, draw, have Daddy play Tickle Monster and put on Dora tatoos.
We leave for Seattle on Thursday this week. Madelyn's appointments are on Friday. I will update more this weekend...
Wednesday, March 2, 2011
March 2nd
Just Madelyn and I drove to Seattle yesterday afternoon. We picked up noodles for dinner at Boom Noodle (her favorite), played ponies and watched The Princess Protection Program. Yup, that's right, the PPP.
I woke her up about 6:45am this morning to get ready to go. (I only have to wake her up on appointment days. When we are home with nothing going on I am usually woken up at around 5:30am). Dressed, numbing cream on and out the door at 7:20am. The routine is Starbucks. First. Thing. She has no problem with this. She understands me. Today, she picked out a special treat to eat once she woke up from "The Sleepy Room." Sweet Potato chips. Good choice I thought. And even with chips, Madelyn is still the gourmet.
Whenever we go to the hospital we put Madelyn in a button-up shirt. She asked me today why there was a hole in the shirt at the cuffs. Do tell, why is that? I told her I was not sure. She told me that Grandma Terry could fix it. Grandma Terry can make anything happen. I think, after all this is done, and probably for the rest of her life, she will not like button up shirts. I tried to put one on her the other day when we were home in Anacortes and she started crying. When I asked her why she was crying she was angry and said "you didn't tell me I had to get a pokey today!!" We absolutely did NOT put that shirt on that day.
Her counts were good today, so she was wammed with chemo. She had methotrexate via spinal tap (she was asleep for this), then methotrexate and vincristine in her IV (port) and extra fluids.
Hem 36.4 Plat 241 WBC 3.4 ANC 1044
I accidentally gave Madelyn some gum right before her anesthesia. Ugh. Can't BELIEVE I did that! So we had to wait an extra hour before receiving the spinal tap. Poor thing... but she was, is, always is a trooper. "Well, we can read more books Mommy - that's good." Luckily, she is not taking steroids right now. If she had been, it would have been an extremely traumatic hour. (Originally, our doctor said that the only opening they had for another spinal tap was at 2pm - a 4 hour wait - but they would try to sneak us in. And they did. An hour later, we were in, thank goodness. The Oncology staff at Children's is simply rad).
Peter and I have decided that as much "at home" time she can have right now the better. So, as Madelyn was feeling good after the appointment, we busted it home! We were back in Anacortes about 2:00pm today!
With her increased dosing of methotrexate we are seeing some nausea now. The prescribed Zofran works well though and we usually need to give her about two doses following her appointments. She is also having some pain from the Vincristine. I noticed a slight out turning of her left foot, floppiness in her footing and uneasy walking today. This is normal and what she had trouble with in December. This neropathy and general de-conditioning from the steroids are why she has been going to Physical Therapy.
As I was waiting for Madelyn to finish her procedure today and wake up from the anesthesia, I got word that a friend and fellow photographer passed away from cancer yesterday. I had an overwhelming numbing feeling throughout my body and was unable to focus for quite sometime. Dick was diagnosed five weeks ago and is now gone from our world. Much love going out to you tonight Mrs. Garvey...
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