As many of you close to me know, I am part of an on-line support group of care givers of kids with ALL - Madelyn's specific type of Leukemia. We all email information, questions, happenings, triumphs and disappointments. Back in January I posted that a 14 year old girl Leann, after a heroic battle, had passed away. I was so devastated for this family. I had been closely reading and following Leann's story for months.
http://madelynjill.blogspot.com/2012/01/jan-18.html
Well, today I found out Leann and her mother Karen were a fake. This girl never existed. It was this woman's way of getting attention. It is a mental disorder called Munchausen By Internet.
I am speechless.
For all of you who love our dear sweet Madelyn... we have created this blog so you may follow us in her battle against Leukemia. We love you all... Lisa and Peter
Friday, April 27, 2012
Thursday, April 26, 2012
April 23
The big, BIG news first: MADELYN STARTING RIDING HER BIKE! She went straight from scooting to riding (no training wheel please). I can't tell you have unbelievably excited and happy this made Peter and I. I can't wait for family bike trips! Sophia, I'm sure, won't be too far off - she has to keep up with sis for peat's sake! Madelyn is stinkin' adorable riding that thing. Especially when she rides it to dance class complete with tutu.
If you keep up with news in Seattle you probably heard the story about the "blue trees" in downtown Seattle by Australian artist Kon Dimopoulos. He painted the trees around Westlake a bright blue (not harmful, water-based paint). It was pretty cool. Madelyn and I happened to stay in a hotel close by after her ER run last week. We were walking by and she went right up to the artists helping and said "what are you guys doing?" They told her and then she said "can I help?" So in true Madelyn fashion she was part of an international art project. By the time we arrived back at our hotel she was covered in blue :) The artist and his wife sent Madelyn and Sophia a sweet note and package (with two stuffed Australian Koala bears!) saying thank you for her help.
http://www.kondimopoulos.com/thebluetrees/westlakeparkseattle/
http://seattletimes.nwsource.com/html/localnews/2017895829_bluetrees.html
Madelyn had her appointment at Seattle Children's on Monday... i.e. she feels pretty yucky right now.. but that girl just keeps on going! Her energy is low, she feels week, she is in pain and nauseated. She has needed a nap each morning, but has made it to school around 9:30am or 10:00am. Madelyn's school is a small, busy, bustling place. There is always a lot of wonderful activity going on. But if Miss Madelyn is tired well... she doesn't care one bit. She pulls out a blanket and pillow, finds a corner and settles down for a power nap. All of her buddies know she has a week of "not feelin' too good" and then she we will be back to being Madelyn.
Her counts this week:
Hem 37.1 Plat 258 WBC 2.5 ANC 1362
They are pushing the chemo again- increasing her daily 6-mecaptopurine. She will also start on a medication to help with neuropathy. Unfortunately, it is starting to rear it's ugly head again. She has been having ankle and foot pain and complaining of a feeling "pins and needles". She has also begun falling more than is normal. She asked me to make sure and talk to the doctor about it. So I made a note on my monthly list of questions and then asked Madelyn to talk discuss it without any Mommy involvement. It was a pretty cute conversation and Dr. Jessica was impressed with how well and coherently Madelyn spoke about how it felt.
Other than that she is super busy being six years old right now. Lots of tutu wearing, dance class going, horse drawing, swimming (like a fish) and getting very close to that "click" moment when reading starts to make sense. (I am been feeling the need to brush up on all those vowel rules. It's really hard to help her with reading when I don't even know why we say it like that!) She is getting excited to start softball for the first time. She got a glove and bat with Grandpa Jim last week. And man, of man, does that girl know how to hit and throw the ball!
Peter and I are beginning to think about the end. I know, I know... it is still 10 months away. But that isn't a year anymore! That is only 10 more "bad" weeks. I hope my heart will be able to take going off chemo. The waiting, the watching, the hoping for no relapse.
If you keep up with news in Seattle you probably heard the story about the "blue trees" in downtown Seattle by Australian artist Kon Dimopoulos. He painted the trees around Westlake a bright blue (not harmful, water-based paint). It was pretty cool. Madelyn and I happened to stay in a hotel close by after her ER run last week. We were walking by and she went right up to the artists helping and said "what are you guys doing?" They told her and then she said "can I help?" So in true Madelyn fashion she was part of an international art project. By the time we arrived back at our hotel she was covered in blue :) The artist and his wife sent Madelyn and Sophia a sweet note and package (with two stuffed Australian Koala bears!) saying thank you for her help.
http://www.kondimopoulos.com/thebluetrees/westlakeparkseattle/
http://seattletimes.nwsource.com/html/localnews/2017895829_bluetrees.html
Madelyn had her appointment at Seattle Children's on Monday... i.e. she feels pretty yucky right now.. but that girl just keeps on going! Her energy is low, she feels week, she is in pain and nauseated. She has needed a nap each morning, but has made it to school around 9:30am or 10:00am. Madelyn's school is a small, busy, bustling place. There is always a lot of wonderful activity going on. But if Miss Madelyn is tired well... she doesn't care one bit. She pulls out a blanket and pillow, finds a corner and settles down for a power nap. All of her buddies know she has a week of "not feelin' too good" and then she we will be back to being Madelyn.
Her counts this week:
Hem 37.1 Plat 258 WBC 2.5 ANC 1362
They are pushing the chemo again- increasing her daily 6-mecaptopurine. She will also start on a medication to help with neuropathy. Unfortunately, it is starting to rear it's ugly head again. She has been having ankle and foot pain and complaining of a feeling "pins and needles". She has also begun falling more than is normal. She asked me to make sure and talk to the doctor about it. So I made a note on my monthly list of questions and then asked Madelyn to talk discuss it without any Mommy involvement. It was a pretty cute conversation and Dr. Jessica was impressed with how well and coherently Madelyn spoke about how it felt.
Other than that she is super busy being six years old right now. Lots of tutu wearing, dance class going, horse drawing, swimming (like a fish) and getting very close to that "click" moment when reading starts to make sense. (I am been feeling the need to brush up on all those vowel rules. It's really hard to help her with reading when I don't even know why we say it like that!) She is getting excited to start softball for the first time. She got a glove and bat with Grandpa Jim last week. And man, of man, does that girl know how to hit and throw the ball!
Peter and I are beginning to think about the end. I know, I know... it is still 10 months away. But that isn't a year anymore! That is only 10 more "bad" weeks. I hope my heart will be able to take going off chemo. The waiting, the watching, the hoping for no relapse.
Here are some recent photos of my beautiful, strong, spunky, super fantastic, sparkolicious girls...
Wednesday, April 18, 2012
little Mia
Please send love and light
into your world today.
There is a Mama and a Daddy
and a little brother waking up this morning to experience day 2 without their
precious baby girl and their forever buddy.
It is a devastation I can not understand. And it is tearing me up inside. I can’t stop crying. This could easily be our reality or our
future. Little Mia fought from age 2
until age 5 and now her family will fight to try and continue to live without her.
Please send strength to our
oncologist, Dr Jessica Parker, and our wonderful team at Seattle Children’s. They have been fighting for Mia too. Pediatric Cancer includes days like these,
but I am sure it is never easy. I’m sure
it always touches a raw place inside.
Rest in peace little Mia.
Thursday, April 12, 2012
more ER runs
Quick update today...
We had another ER run over the weekend. Poor honey. By 5pm on Saturday night before Easter Madelyn was screaming from pain in her ear. It was exactly the same as three months ago coming home from Leavenworth. I called the on-call Oncologist at Children's and they instructed us to go to the ER at Island Hospital. Phew. We were in and out 1.5 hours! Yup, ear infection! Antibiotics were started by 8pm. She was in bed by 9pm.
She is feeling great now and headed back to school on Tuesday.
It was a hard decision to send her back to school and come off Lock Down. The Whooping Cough outbreak is still at epidemic levels in WA State, but the few cases loosely associated with the school were two weeks ago. And we are all going stir crazy. Madelyn and Sophia have both been spilling over in smiles and energy since going back. We will still try and stay away from "people" places... but back to school is good for us all...
We went to Island Hospital on Monday for counts. She is back to HER normal counts - the right level of immune system suppression.
Hem 34 Plat 338 WBC 2.8 ANC 1397
ALT (liver toxicity) is on the rise again... we will continue to monitor that.
Our next appointment is on April 23. I hope I have nothing to report until then!
We had another ER run over the weekend. Poor honey. By 5pm on Saturday night before Easter Madelyn was screaming from pain in her ear. It was exactly the same as three months ago coming home from Leavenworth. I called the on-call Oncologist at Children's and they instructed us to go to the ER at Island Hospital. Phew. We were in and out 1.5 hours! Yup, ear infection! Antibiotics were started by 8pm. She was in bed by 9pm.
She is feeling great now and headed back to school on Tuesday.
It was a hard decision to send her back to school and come off Lock Down. The Whooping Cough outbreak is still at epidemic levels in WA State, but the few cases loosely associated with the school were two weeks ago. And we are all going stir crazy. Madelyn and Sophia have both been spilling over in smiles and energy since going back. We will still try and stay away from "people" places... but back to school is good for us all...
We went to Island Hospital on Monday for counts. She is back to HER normal counts - the right level of immune system suppression.
Hem 34 Plat 338 WBC 2.8 ANC 1397
ALT (liver toxicity) is on the rise again... we will continue to monitor that.
Our next appointment is on April 23. I hope I have nothing to report until then!
Tuesday, April 3, 2012
April 3 - bag was needed
Unfortunately, that packed bag was needed. Darn it!
Sophia's fever was gone and she was feeling much better by Friday, however, Madelyn was noticeably sick. A fever of 101.5 presented itself Sunday morning so it was off to Seattle Children's ER for MJ and I. (As soon as Madelyn gets a fever of 101 we have to head to the hospital).
We were in the ER from about 1:00pm until about 6:00pm. They accessed her port, pulled blood for CBCs and blood cultures and two different instruments were put up her nose for viral tests. We are talking wayyyy up her nose, poor honey. Those tubes and swabs looked like they could have reached her stomach.
Her CBC came back with an ANC of around 7,000 and WBC of 6.2! Her little body was obviously fighting something big time. I had never seen these numbers from Madelyn before and they concerned me so I asked them to talk to Oncology. Poor Madelyn. That talk resulted in another swab being stuck up her nose and seemingly down to her toes. By this third nose swab / torture she was over it. That girl knows how to scream when she wants to and boy did she scream bloody murder. I did't blame her.
Mom's of cancer kids often get called Mom-acologists. We learn a lot going through this process. We learn a lot about the medical "stuff" but also gain the confidence to always ask questions, clarify and help make decisions. I saw this in myself several times in the ER Sunday. Here are a few examples:
Without being asked I immediately indicated that I didn't feel Madelyn's counts would probably be low because she just finished a five day pulse of Dexamethazone. I thought a Whooping Cough test might be in order due to possible contact at school.
The amount of blood they drew from Madelyn did not seem enough to me for doing a CBC and blood cultures. As they were leaving I asked them about it and they said we don't have orders for blood cultures. I was sure this was wrong. They called and yes there was a mistake. The blood cultures were needed but were missed in the orders.
When I was speaking with the Nurse Practitioner in charge, Madelyn's IV pole started beeping. Her bolis of saline was complete. Without stooping my conversation, I turned off the IV machine alarm. The NP said "I can't believe you know how to do that. I don't know how to do that."
The ER nurses and NP were all very nice to us and MJ enjoyed all the attention as usual. She took a nap, had snacks and watched a little Thomas the Train on the IPad.
We were released from the ER around 6pm but were still unsure whether we would be picking up some additional medicine at the pharmacy. So we killed a little time reading books in the car and picking up dinner at the grocery store. I decided it would be best to stay in a hotel that night as I wasn't sure what the blood cultures would show. If they were positive it would mean heading back to the hospital for IV antibiotics and possible in-patient stay. Plus I was tired. I really didn't want to drive all the way back home. I also didn't want to go to my sisters and bring MJs sickness to her family.
All the tests came back negative! We heard some initial results that night (no meds to pick up right away) and the next morning blood cultures were negative. She has a common cold. Hooray for a cold.
Even though it is stressful and exhausting it doesn't bother me at all to make these ER runs. If it's nothing. Again, hooray and I can rest easy. If it is an infection that needs to be dealt with immediately, I know we got there are soon as it presented and we are in the best hands. It is just a no brainer.
Tonight, Tuesday, she is feeling much better; just a little run down and no more fever! She is also done with her steroid side effects and we have our Madelyn back! As far as I go... Lock Down (due to Skagit County Whooping Cough outbreak), plus sick kids, plus lots of classic Seattle spring rain = ughhhhhhhhh. Mama is feeling close to loosing it. :)
Sophia's fever was gone and she was feeling much better by Friday, however, Madelyn was noticeably sick. A fever of 101.5 presented itself Sunday morning so it was off to Seattle Children's ER for MJ and I. (As soon as Madelyn gets a fever of 101 we have to head to the hospital).
We were in the ER from about 1:00pm until about 6:00pm. They accessed her port, pulled blood for CBCs and blood cultures and two different instruments were put up her nose for viral tests. We are talking wayyyy up her nose, poor honey. Those tubes and swabs looked like they could have reached her stomach.
Her CBC came back with an ANC of around 7,000 and WBC of 6.2! Her little body was obviously fighting something big time. I had never seen these numbers from Madelyn before and they concerned me so I asked them to talk to Oncology. Poor Madelyn. That talk resulted in another swab being stuck up her nose and seemingly down to her toes. By this third nose swab / torture she was over it. That girl knows how to scream when she wants to and boy did she scream bloody murder. I did't blame her.
Mom's of cancer kids often get called Mom-acologists. We learn a lot going through this process. We learn a lot about the medical "stuff" but also gain the confidence to always ask questions, clarify and help make decisions. I saw this in myself several times in the ER Sunday. Here are a few examples:
Without being asked I immediately indicated that I didn't feel Madelyn's counts would probably be low because she just finished a five day pulse of Dexamethazone. I thought a Whooping Cough test might be in order due to possible contact at school.
The amount of blood they drew from Madelyn did not seem enough to me for doing a CBC and blood cultures. As they were leaving I asked them about it and they said we don't have orders for blood cultures. I was sure this was wrong. They called and yes there was a mistake. The blood cultures were needed but were missed in the orders.
When I was speaking with the Nurse Practitioner in charge, Madelyn's IV pole started beeping. Her bolis of saline was complete. Without stooping my conversation, I turned off the IV machine alarm. The NP said "I can't believe you know how to do that. I don't know how to do that."
The ER nurses and NP were all very nice to us and MJ enjoyed all the attention as usual. She took a nap, had snacks and watched a little Thomas the Train on the IPad.
We were released from the ER around 6pm but were still unsure whether we would be picking up some additional medicine at the pharmacy. So we killed a little time reading books in the car and picking up dinner at the grocery store. I decided it would be best to stay in a hotel that night as I wasn't sure what the blood cultures would show. If they were positive it would mean heading back to the hospital for IV antibiotics and possible in-patient stay. Plus I was tired. I really didn't want to drive all the way back home. I also didn't want to go to my sisters and bring MJs sickness to her family.
All the tests came back negative! We heard some initial results that night (no meds to pick up right away) and the next morning blood cultures were negative. She has a common cold. Hooray for a cold.
Even though it is stressful and exhausting it doesn't bother me at all to make these ER runs. If it's nothing. Again, hooray and I can rest easy. If it is an infection that needs to be dealt with immediately, I know we got there are soon as it presented and we are in the best hands. It is just a no brainer.
Tonight, Tuesday, she is feeling much better; just a little run down and no more fever! She is also done with her steroid side effects and we have our Madelyn back! As far as I go... Lock Down (due to Skagit County Whooping Cough outbreak), plus sick kids, plus lots of classic Seattle spring rain = ughhhhhhhhh. Mama is feeling close to loosing it. :)
Thursday, March 29, 2012
March 29 - drama!
Madelyn had her monthly appointment at Seattle Children's on Monday. It was a dramatic day. There were two issues that were concerning Peter and I. The first, was some pain in her arms and legs too far away from her infusion to be the chemo. The second, being a type of sighing or gasping she does from time to time. She describes it has having trouble breathing. It sounds like "I need just a little more air in my lungs." This has been going on for about six or seven weeks now. We talked to our NP about it last week and decided to wait and watch. It has definitely been making us worry the last couple weeks.
Our provider indicated the worse case scenario for both symptoms and the best case scenario. The worst case scenario was a little like getting punched in the stomach. The pain could be relapse in the bone marrow and the gasping being a relapse of cancer on her lymph nodes. Our NP did a through examine including spleen and lymph node check and lung check. Then we headed down for an xray. She also ran a report on Madelyn's counts for about six months.
Her counts are not consistent with relapse of the bone marrow. Our NP told us (something I wan't aware of) that those platelets are finicky things. If there is a downward trend in the platelets and an upward trend in the white blood cells, then they start to get nervous and order a bone marrow biopsy. They felt the pain was probably just side effects of the chemo. They told us to still watch and record the symptoms, but they weren't concerned at this point. \
We didn't hear the results of the xray back until about 3:30pm - so it was a longggggg afternoon. Thank goodness the xray was clear. She said their next steps would be pulmonary tests and an EKG (i.e. a cardiac issue). Our team thought, based on MJ's exam and on our description of the frequency and situations, that we should wait, watch and record. So that is what we are doing now.
What I love about our team at Seattle Children's is that they didn't say "this is what you have to do." They said, this is what we recommend at this point. If you get home tomorrow and you don't feel comfortable waiting - even for piece of mind - we can order those tests tomorrow. Everyone we see in Oncology says "please call us at anytime with any question you might have." I really, really appreciate this...
THEN! On the drive home, Madelyn and Sophia's wonderful teacher Tina called and said that a mother of one of the students had Whooping Cough (Pertussis). There is also an outbreak of Whooping Cough in both Skagit and Snohomish Counties as reported by the health departments. You might have seen it on the news. There are a few infections that are super NOT GOOD for MJ to get and this is one of them. Also chicken pox, H1N1... If there is a known exposure to one of these it means straight to Seattle Children's for preventative IV antibiotics and monitoring. Whooping Cough is usually more of an issue for adults because we don't know to be re-vaccinated. The vaccination only lasts 10 years so most kids are covered. Unfortunately, there is one un-vaccinated child at school so we will wait. Luckily, Madelyn's wonderful pediatrician here in Anacortes reminded Peter and I to get the booster in order to protect Madelyn last year. Madelyn too had the vaccination, but the trouble with her suppressed immune system is that those white blood cells are not firing with full cylinders. So we are on self imposed Lock Down right now to be extra careful. A few weeks at home in the grand scheme of "it could kill her"... is obviously no big deal and a no brainier for us. If you read this and think, oh wow, I haven't been re-vaccinated... go and do it! Any of the pharmacies can help you with that. Keep in mind that once vaccinated it takes two weeks to take effect. Also people can have Whooping Cough for 7-10 days before showing signs of sickness.
THEN! Last night Sophia had a 103 temperature and other cold symptoms. So now we are in wait and see mode for fever! For most kids a fever is just uncomfortable and you wait it out. That is what Sophia is doing and she is still, luckily, in a wonderful mood. However if Madelyn gets a low grade fever it is off to Seattle Children's for us. I decided to pack a bag for the hospital. It is sitting in the hallway waiting for us. I am sure if it is there, we won't need it.
MJs counts were:
Hem 39.0 Plat 283 WBC 2.9 ANC 1,600
Our provider indicated the worse case scenario for both symptoms and the best case scenario. The worst case scenario was a little like getting punched in the stomach. The pain could be relapse in the bone marrow and the gasping being a relapse of cancer on her lymph nodes. Our NP did a through examine including spleen and lymph node check and lung check. Then we headed down for an xray. She also ran a report on Madelyn's counts for about six months.
Her counts are not consistent with relapse of the bone marrow. Our NP told us (something I wan't aware of) that those platelets are finicky things. If there is a downward trend in the platelets and an upward trend in the white blood cells, then they start to get nervous and order a bone marrow biopsy. They felt the pain was probably just side effects of the chemo. They told us to still watch and record the symptoms, but they weren't concerned at this point. \
We didn't hear the results of the xray back until about 3:30pm - so it was a longggggg afternoon. Thank goodness the xray was clear. She said their next steps would be pulmonary tests and an EKG (i.e. a cardiac issue). Our team thought, based on MJ's exam and on our description of the frequency and situations, that we should wait, watch and record. So that is what we are doing now.
What I love about our team at Seattle Children's is that they didn't say "this is what you have to do." They said, this is what we recommend at this point. If you get home tomorrow and you don't feel comfortable waiting - even for piece of mind - we can order those tests tomorrow. Everyone we see in Oncology says "please call us at anytime with any question you might have." I really, really appreciate this...
THEN! On the drive home, Madelyn and Sophia's wonderful teacher Tina called and said that a mother of one of the students had Whooping Cough (Pertussis). There is also an outbreak of Whooping Cough in both Skagit and Snohomish Counties as reported by the health departments. You might have seen it on the news. There are a few infections that are super NOT GOOD for MJ to get and this is one of them. Also chicken pox, H1N1... If there is a known exposure to one of these it means straight to Seattle Children's for preventative IV antibiotics and monitoring. Whooping Cough is usually more of an issue for adults because we don't know to be re-vaccinated. The vaccination only lasts 10 years so most kids are covered. Unfortunately, there is one un-vaccinated child at school so we will wait. Luckily, Madelyn's wonderful pediatrician here in Anacortes reminded Peter and I to get the booster in order to protect Madelyn last year. Madelyn too had the vaccination, but the trouble with her suppressed immune system is that those white blood cells are not firing with full cylinders. So we are on self imposed Lock Down right now to be extra careful. A few weeks at home in the grand scheme of "it could kill her"... is obviously no big deal and a no brainier for us. If you read this and think, oh wow, I haven't been re-vaccinated... go and do it! Any of the pharmacies can help you with that. Keep in mind that once vaccinated it takes two weeks to take effect. Also people can have Whooping Cough for 7-10 days before showing signs of sickness.
THEN! Last night Sophia had a 103 temperature and other cold symptoms. So now we are in wait and see mode for fever! For most kids a fever is just uncomfortable and you wait it out. That is what Sophia is doing and she is still, luckily, in a wonderful mood. However if Madelyn gets a low grade fever it is off to Seattle Children's for us. I decided to pack a bag for the hospital. It is sitting in the hallway waiting for us. I am sure if it is there, we won't need it.
MJs counts were:
Hem 39.0 Plat 283 WBC 2.9 ANC 1,600
Friday, March 23, 2012
March 15-20 Make A Wish trip
As most of you know Madelyn’s one true wish was to be a cowgirl. To ride horses, take care of horses and to live on a ranch. The wonderful people at Make A Wish made this happen for my girl. We feel so thankful to be given this special moment in time. As we drove away from the ranch on Tuesday... down the bumpy, dusty road to the real world... Madelyn was very, very sad. Sophia started crying. She didn’t want to leave Scooter, her horse. Madelyn wanted to keep living at the ranch. She asked if we could come again, but stay two weeks next time...
Now to the beginning of our trip... when we arrived at SeaTac airport on Thursday morning we were greeted by our own personal TSA agent, Julie, and our Make A Wish volunteers, Karen and Lora. We were then checked in by the Alaska Airlines manager personally. He took care of all our bags and gave special passes to Karen and Lora so they could accompany us to the gate. We then headed off to our own line at security with our TSA escort. We were then delivered to the Alaska Airlines lounge with buffet of food, beverages and a nice waiting area.
Now to the beginning of our trip... when we arrived at SeaTac airport on Thursday morning we were greeted by our own personal TSA agent, Julie, and our Make A Wish volunteers, Karen and Lora. We were then checked in by the Alaska Airlines manager personally. He took care of all our bags and gave special passes to Karen and Lora so they could accompany us to the gate. We then headed off to our own line at security with our TSA escort. We were then delivered to the Alaska Airlines lounge with buffet of food, beverages and a nice waiting area.
When it was time to board our plane, an Alaskan agent met us and brought us to the front of the line. She handed us some toys and activities for the girls. The agent then announced over the speaker system, that Madelyn Kuhnlein was on her Make A Wish trip with her sister Sophia and parents. She explained that we were off to Tucson, AZ so Madelyn could learn to be a cowgirl on a dude ranch and that she would also be celebrating her 6th birthday while there. Everyone at the gate cheered and clapped as we entered the gangway. Madelyn and Sophia beamed and I started to cry.
The flight was terrible for me. So bumpy! I was nervous and sick to my stomach. Peter sat with the girls and I suffered in silence. Near the end of the flight the turbulence finally abated and Madelyn came over and snuggled with me. She charmed the nice ladies sitting next to me with her forward personality and easy smile. She was absolutely certain they wanted to hear all about her various stuffed horses. The stewardesses announced again Madelyn’s trip and birthday as we were touching down and we got another round of applause. And, I cried. Again. It was incredibly special for Peter and I, after watching Madelyn suffer for a year and half, to be so excited about something.
When we came down the escalator into baggage claim, another volunteer from Make A Wish was there with a sign and balloons saying “Welcome Cowgirl Madelyn.” There were adorable stuffed horses in little purses and full-on cowgirl hats waiting for them! And they were PINK! Too awesome. The sweet driver from White Stallion Ranch was there to pick us up. First thing he said to me was “Somebody from your flight just gave me $20 to give to you!” We used that $20 to buy Madelyn and Sophia cool horse shirts in the ranch gift shop. Later, the ranch ended up giving her the exact one as a gift. We asked her if she’d like to exchange it for another... she said “No! I want to give it to Alaina (her best bud) as a gift!.”
The girls were pretty tired by
the time we got into the van and started the drive to the ranch. They were up at 6am that morning (so excited), we left Anacortes at 8am to drive to Seattle, flight to Tucson and a little time in the sun at the airport waiting for additional ranch guests. It was now 4:00pm. So we encouraged them to take a nap on the drive. Madelyn said “ok” and went right to sleep. Sophia gave us her super grumpy I’m Mad At You look and said “I’m not tired!!!” Two minutes later she was asleep. The nap did them good. When we drove into the ranch on that bumpy, dusty road Madelyn woke up with a big sparkle in her eye. She knew we had arrived. When she saw the big sign (a classic ranch entrance) stretching across the road as we entered, she nearly screamed “We’re at the ranch!” We parked and Madelyn literally bounced out of the van. She headed straight over to the horses without so much as a look back at us.
On our first day, Friday, we struggled a little figuring out the system at the ranch, but after that we were fully in love with the place and the people. We were at the White Stallion Ranch in Tucson, AZ. This will go down in our family history as one of the most fantastic vacations we have EVER had. Most of you know we travel - a lot - and have been to many exotic locations around the world. Even Madelyn... who has been on over 30 plane rides, with five trips to Europe, in her 6 years. But this place was special. We all loved learning about horses, watching horses, riding horses and being quiet out in the desert. The scenery and location was breath taking. Peter and I are already planning when to go again... when Sophia is 5 and can trail ride too!
Sophia waiting for dinner... that's a big BBQ in the background.
MJ outside of our "house."
Awesome cowgirl boots the girls received from Make A Wish.
Madelyn and I headed out on a Slow Ride at 9am (walk in the desert on horseback) and I cried again a little. She had the biggest grin plastered on her face and she carried herself in a state of spilling over happiness. In the afternoon she had a lesson with Moniek a wrangler on the ranch from, of all places, The Netherlands. Moniek gave Madelyn lots of extra cowgirl attention the whole trip and accompanied us on all our horse activities. Both girls only had smiles for pretty, sweet Moniek. In the afternoon, Peter’s sister and our niece and nephew came out to the ranch for a visit (they live in Tucson) and we all dipped in the pool. It was hot, in the mid-80s... the heat felt so good. Madelyn said “Mommy, when I get older I am going to live in a hot place.”
The very moment she was on Bronco for the first time.
So Saturday, birthday day, was filled with so many activities of her choosing - we were worried we might have a major melt down on our hands. But not once did we hear even a wine... she was in heaven. Here is how the day played out:
7am straight to the corral to brush “her” horse Bronco with Moniek
8am breakfast of three sausages, fruit and OJ (she always knows exactly what she wants)
9:15am Slow Trail Ride with Peter. Again, she had a smile plastered on her face and sang “Puff The Magic Dragon” the whole ride.
10:45am she watched a horse being trained
11:30am we had lunch with the Magner family (Peter’s sister’s family) including a homemade poppy seed birthday cake with blueberries, homemade prickly pear lemonade, and presents. Thank you Letitia!!
1pm riding lesson with Moniek and two sweet teenage girls. A storm started to roll in this day. It was still warm but the wind gusted and layered us all in dust. Madelyn didn’t care though. She kept on riding, dust and all. Again, not one wine!
2:30pm she gave Bronco a bath with Moniek
3:00pm We all, including Moniek, helped the cowboy JC feed the animals in the petting zoo and the cattle. We did this sitting in the back of an old pickup truck on top of hay bales.
4:00pm Rodeo. This was fascinating for us all. The owner of the ranch, Russell, gave the guests a funny, colorful explanation of each event and some rodeo history. The girls sat through the whole thing entirely entertained.
Before dinner we relaxed in the lodge playing chess with Madelyn and Sophia’s rules. The rules were quite confusing for us and somehow always insured that they won. We did puzzles, colored and munched on appetizers. Peter and I sipped brutally good prickly pear margaritas.
At dinner, there was live cowboy music. The girls danced around the patio and head bobbed to the music while eating. Then the ranch staff came out singing with an ice cream cake, birthday candles and gifts from the ranch and Make A Wish. The presents were a surprise to us all! The ranch also gave the girls pictures of Bronco and Scooter. Madelyn asked Moniek and the two teenage girls over to our table to share in her birthday cake. Half way through the cake it happened. She finally hit Tired. She climbed into Peter’s lap and said “I want to go to bed now.” So we picked her up, took her to our room and put her in bed with dust covering her from head to toe. She was asleep in about 20 seconds.
It was the best birthday ever.
During this trip, I counted 10 times that strangers went out of their way to comment on Madelyn. It’s interesting, she often garners this sort of response from people. They comment on her confidence, her charisma, her easy smile and her engaging personality. They also comment on how she takes care of and watches out for her sister; how they are obviously very close. I tell them about her already inherent tenacity but how it has been tested in this last year and half. How her battle with cancer has encouraged her already strong belief in herself. She is not shy to say how she feels, what she thinks or how she wants things done. She is also very caring and observant of people. I am so incredibly proud of my girl.
MJ and Moniek.
Working on her lasso skills.
Feeding the horses.
MJ and Bronco. Check out Daddy in the background. Getting into the cowboy look!
Watching the training of a horse.
How cool is this girl?
Daddy learning how to trot.
Moniek, our cowgirl friend, from Holland.
In the "bar" having "drinks" (cranberry juice) and chips. They are sitting on saddles.
Playing "chess."
As Madelyn headed out to the coraal for her lessons she followed a new guest, an older gentlemen from Britian. His horse started eating some vegetation along the path. Madelyn said “Don’t let your horse do that. It’s not good for him. What you do is lift up your reigns and then lower the reigns and give him a kick with both your legs. That will get him to go.” The man was thoroughly amused having this six year old girl tell him how it is. They had a nice chat waiting to entering the corral. I didn’t hear the rest of the conversation, but he had a smile on his face the whole time. So did I.
We also arranged for a dual “pony” ride for the girls. Sophia was too young to do any of the trail rides or lessons, but she could do “pony” rides. She was on a smaller adult horse and walked down the road with a wrangler leading and Peter or I by her side. This was actually perfect for her and she loved it. Such grins. She loved her horse Scooter and was particularly happy to have a ride with big sis. Sophia had a marvelous time at the ranch too. She loved the petty zoo and the nice pack of dogs that roamed the ranch. She loved feeding the horses and rubbing their noses. She loved swimming and listening to the musicians each night. She loved wearing her pink cowboy hat and sparkly red cowboy boots. We were very proud of our Sophia-girl. She never showed any fear of the horses, she was just inquisitive and fascinated. I so enjoyed watching her stretch her arm up and pet the horses. She is really growing up...
Sophia getting a "pony" ride on her favorite horse Scooter with Moniek's help. So happy.
One of MJ and Phia's rides together.
Madelyn, Sophia and Moniek together.
My favorite people in the whole world.
At the ranch petting "zoo".
Tuesday was our departure day. Before packing, Madelyn and I headed to the corral and saddled up for a trail ride with breakfast in the desert. The desert was cold, but alluring, quiet and exotic. Rugged mountains and huge, old saguaros surrounded us. It was amazing to be there and know in a few hours we would be home again. As we pulled into the “picnic” spot, Peter and Sophia were there waiting for us; they came with the van delivering the food. Eggs, potatoes, blueberry pancakes, coffee, hot coco were served to us in the middle of the desert. Peter then went back on the trail with Madelyn and I went back to the ranch in the van with Sophia. Then Madelyn and I had one last riding lesson. Madelyn’s last ride with Bronco. She (sort of) trotted around barrels, weaved Bronco through cones and practiced her balancing. Madelyn’s stomach didn’t feel so good (Monday night is always her big dose of chemo night) so we headed in early. We gave Bronco and Moniek a big hug... and then... it was time to go. We were NOT ready to go.
Waiting for their horses.
Daddy AND Mommy got into the cowboy look!
She loved trotting Bronco. She is in full laugh/smile/glee mode right here.
Our morning trail ride with breakfast in the desert.
Loving the hot coco.
So proud and happy for this cowgirl.
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