I wanted to tell you all about a friend of my Mom's, 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's Team In Training in Seattle. Madelyn and I hope to go visit the team soon. My Mom sent her a Tshirt to wear while running with Madelyn and Grandm'as picture on it.
http://pages.teamintraining.org/wa/paris11/dnelsonhah
There is also a Pediatric Cancer Walk happening at Magnuson Park this summer. We hope to participate in this as a family and have as many Madelyn lovers with us as possible. I will send details on this soon. Magnuson Park is right next to our apartment in Seattle so we may plan a little party afterwards in the Community Center. Will keep you all posted on that...
I also wanted to give you all an update on Jedi Simon. He has had an extremely rough two weeks. So rough, I won't go into the details. I cry every time I read his blog. I will go straight to the good news. He has finally en graphed!!!!!! This means the new cells have taken up residence in his body and are producing new healthy cells. His ANC was 450 yesterday. They have been in the hospital since the end of January and I bet the idea of possibly going home in a week or so seems almost surreal. (His Mom said the preliminary list of meds they would go home with were 28). All your warms thoughts, prayers, use of the Force and Engraphment Dancing have worked. Thank you.
So we are entering the month of March... I can't believe we are there already. We have four weeks left at home (with traveling to Seattle for treatment weekly). Come the week of March 28th we will be living in Seattle full time again until the first of June. We will be more organized this time around though. We have a wonderful new photographer, named Kimee, that will be working with us at the studio. She will help keep us organized so we can keep working.
Saturday, February 26, 2011
Friday, February 25, 2011
Feb 22nd
Madelyn had an appointment on Tuesday Feb 22nd this week. Starting 12:20pm which is much later than we are used to (usually around 8 or 9am). So we decided to leave Anacortes that morning. All fine, except our normal routine was off and we realized when we got to Hem/Onc that we forgot to put MJ's numbing cream on her port!!! Ekkkk!! I could NOT believe we did that. Luckily, they have a faster acting 20 min cream that she used. It had been almost 2 weeks since her last appointment so being accessed caused her a little more anxiety this time. We are now back to appointments every week.
The Hem/Onc clinic had also become a mini-toy-store that day. The hall was filled with toys that kids and their siblings could choose from. That was good because I had also forgotten our usual "stuff." It's always a long process being at clinic. I pack a big bag of snacks, drinks, coloring, toys, books, etc. Totally didn't remember that either! So they played with a new Barbie and a strange noise making alien doll Phia picked out. Classic Phia.
So Madelyn's ANC was pretty low this week. 606. This meant she was not able to get her dose of Methotrexate that she was scheduled for. We're not sure what to think about that. The doctors says that they don't want to skip a dose, but if her ANC is below 750 then they do. So she just had the Vincristine. The Methotrexate and Vincristine are both chemotherapies. So because her ANC is so low - we will be lying low.... not out and about as much until her number is back up.
Hem 35.0 Plat 348 WBC 3.0 and ANC 606
Madelyn's energy has been great this week and she is feeling good. We had a little scare last evening as she started running a low-grade temp of around 99.5 from about 2pm until 8pm. She awoke this morning feeling good and no fever, thank goodness. She went to Physical Therapy today, Friday, with Amy and did wonderfully. Although PT at Island Hospital is verrrry distracting. She kept watching the other patients and asking Amy "what's this, what's that, what's this for?" It was funny.
So Peter and I have been pretty busy with work the last week or so. On Wednesday, we had a photoshoot for the Bunnies by the Bay's fall catalog in Seattle. Madelyn and Sophia came along and helped us with the babies. Madelyn especially loved this. Here are some photos from our time in Seattle.
The Hem/Onc clinic had also become a mini-toy-store that day. The hall was filled with toys that kids and their siblings could choose from. That was good because I had also forgotten our usual "stuff." It's always a long process being at clinic. I pack a big bag of snacks, drinks, coloring, toys, books, etc. Totally didn't remember that either! So they played with a new Barbie and a strange noise making alien doll Phia picked out. Classic Phia.
So Madelyn's ANC was pretty low this week. 606. This meant she was not able to get her dose of Methotrexate that she was scheduled for. We're not sure what to think about that. The doctors says that they don't want to skip a dose, but if her ANC is below 750 then they do. So she just had the Vincristine. The Methotrexate and Vincristine are both chemotherapies. So because her ANC is so low - we will be lying low.... not out and about as much until her number is back up.
Hem 35.0 Plat 348 WBC 3.0 and ANC 606
Madelyn's energy has been great this week and she is feeling good. We had a little scare last evening as she started running a low-grade temp of around 99.5 from about 2pm until 8pm. She awoke this morning feeling good and no fever, thank goodness. She went to Physical Therapy today, Friday, with Amy and did wonderfully. Although PT at Island Hospital is verrrry distracting. She kept watching the other patients and asking Amy "what's this, what's that, what's this for?" It was funny.
So Peter and I have been pretty busy with work the last week or so. On Wednesday, we had a photoshoot for the Bunnies by the Bay's fall catalog in Seattle. Madelyn and Sophia came along and helped us with the babies. Madelyn especially loved this. Here are some photos from our time in Seattle.
Lots of mama's, babies, diapers, car seats and bottles at the studio in Greenwood.
Madelyn playing with one of our models.
Busy, busy - Baby Mayhem! I think it was eight babies at once.
Girls were so good during the shoot we took them out for spaghetti lunch. Phia is saying NO MORE PHOTOS MAMA!!!!
Madelyn is really starting to look like herself again. She lost about 2 1/2 pounds since her last appointment! That Dexamethazone-induced weight is starting to go away just in time to start it back up again in about four weeks.
Doctors are surprised by how much hair she has!
Peter shielding himself from the spaghetti splatter.
Pretty tuckered out after an early morning getting to the photo shoot, playing with babies for four hours and big lunch. They both slept the whole way home to Anacortes.
We left Seattle with NO snow. We arrived in mounds of it! They were excited...
Sunday, February 13, 2011
Feb 13
It's been awhile since my last post. We've entered what feels like a strange world of "back to life"... it's a new normal, but it is life minus the feeling of crisis. I'm not sure it is easier, but it is better.
We did NORMAL things this week. We went to a Super Bowl party at the Harrington's. I went for a walk with three of my favorite gals. Madelyn had a spend the night with the Rutz' Clan after we all had pizza night together. Peter and I did FOUR photo shoots. MJ and Phia played with Ashley, Alaina and Avi. We had wine with the Fowler/Dawsons while the girls screamed and ran around throwing pillows (well... actually Peter was the instigator of that part of the night). Madelyn went to school from 7:30am-8:30am with Miss Tina one day. Peter and I went for a hike and had an awesome lunch at Adrift just the two of us - thanks to our beautiful, thoughtful, much loved friend Ashley. We played in Mom and Dad's hot tub. Peter had a climbing night.
As I write all that down I am amazed. In the middle of it, Peter felt a little head-cold coming and Phia had a runny nose. Madelyn and I went to Seattle early to "stay clear" of the sick-ies and for her appointments. We arrived Wednesday morning and my good friend, Shelly and her boyfriend Scott stopped by that evening. They brought gifts and added laughter to our night. Thursday morning Madelyn had her appointments until 12:30pm and then we napped most of the afternoon (both of us). Come 4:30pm we got ready for some more visitors. An old client emailed me when he received our Christmas card this year. He too had Leukemia when he was a child. It was such a good night for me... hearing his experiences, remembrances and feeling his solidarity. Thank you Matt! Friday morning we went to my sisters for a few hours of play with the cousins and then Physical Therapy.
Madelyn has started sleeping in a little longer in the mornings. Her energy is still good, but she is a little more tired, having some nausea and a little pain. Her temper tantrums seemed a little better this week. We awoke a little late Thursday morning - at 7am - and I immediately had to put on her Emla cream (the "magic cream" or "numbing cream"). We brushed teeth and headed out the door at 7:30am. First appointment was at 8am. Her red blood cells and platelets are good, but her white blood cell count is still down and her ANC is down. This means we have to be even more careful about her getting sick. Her body can't fight off infection and if she were to get a fever she would immediately be in the hospital.
Hem 33.7 Plat 348 WBC 2.6 ANC 801
If her ANC had been 750 they would have not given the Methtrexate / chemo. Luckily it was still high enough. We don't want her to have to skip a dose. The chemotherapy wipes out both the bad cells and good cells, but we want to see her numbers recovering back to where they were before. with each appointment, until the end of March, her dose amount will be increasing. I am concerned abut the next appointment.
Next week MJ has a whole week to be home and then the weekly appointments start again. Starting the end of March we will be in Seattle full time again and the really intense part of treatment will begin.
On a lighter note, I have started recording some of my absent minded behavior. I'm astonished by the quantity and frequency. I have never before had my brain so preoccupied. It's even worse than "newborn-no-sleep" brain. Here are a few examples:
- I took a bath before bed the other night. I put my bra on then my PJs and climbed into bed.
- I found the milk jug in the cabinet.
- I have washed my hair twice in the shower (instead of one wash and one condition) several times.
- I pulled the sheets off the bed, to put clean ones on, and somehow put the dirty sheets right back on.
- I was doing the dishes the other day and stood there dumbfounded. I couldn't remember where I put the silverware in the dishwasher (um, hello???).
There are many more ... :)
-
We did NORMAL things this week. We went to a Super Bowl party at the Harrington's. I went for a walk with three of my favorite gals. Madelyn had a spend the night with the Rutz' Clan after we all had pizza night together. Peter and I did FOUR photo shoots. MJ and Phia played with Ashley, Alaina and Avi. We had wine with the Fowler/Dawsons while the girls screamed and ran around throwing pillows (well... actually Peter was the instigator of that part of the night). Madelyn went to school from 7:30am-8:30am with Miss Tina one day. Peter and I went for a hike and had an awesome lunch at Adrift just the two of us - thanks to our beautiful, thoughtful, much loved friend Ashley. We played in Mom and Dad's hot tub. Peter had a climbing night.
As I write all that down I am amazed. In the middle of it, Peter felt a little head-cold coming and Phia had a runny nose. Madelyn and I went to Seattle early to "stay clear" of the sick-ies and for her appointments. We arrived Wednesday morning and my good friend, Shelly and her boyfriend Scott stopped by that evening. They brought gifts and added laughter to our night. Thursday morning Madelyn had her appointments until 12:30pm and then we napped most of the afternoon (both of us). Come 4:30pm we got ready for some more visitors. An old client emailed me when he received our Christmas card this year. He too had Leukemia when he was a child. It was such a good night for me... hearing his experiences, remembrances and feeling his solidarity. Thank you Matt! Friday morning we went to my sisters for a few hours of play with the cousins and then Physical Therapy.
Madelyn has started sleeping in a little longer in the mornings. Her energy is still good, but she is a little more tired, having some nausea and a little pain. Her temper tantrums seemed a little better this week. We awoke a little late Thursday morning - at 7am - and I immediately had to put on her Emla cream (the "magic cream" or "numbing cream"). We brushed teeth and headed out the door at 7:30am. First appointment was at 8am. Her red blood cells and platelets are good, but her white blood cell count is still down and her ANC is down. This means we have to be even more careful about her getting sick. Her body can't fight off infection and if she were to get a fever she would immediately be in the hospital.
Hem 33.7 Plat 348 WBC 2.6 ANC 801
If her ANC had been 750 they would have not given the Methtrexate / chemo. Luckily it was still high enough. We don't want her to have to skip a dose. The chemotherapy wipes out both the bad cells and good cells, but we want to see her numbers recovering back to where they were before. with each appointment, until the end of March, her dose amount will be increasing. I am concerned abut the next appointment.
Next week MJ has a whole week to be home and then the weekly appointments start again. Starting the end of March we will be in Seattle full time again and the really intense part of treatment will begin.
On a lighter note, I have started recording some of my absent minded behavior. I'm astonished by the quantity and frequency. I have never before had my brain so preoccupied. It's even worse than "newborn-no-sleep" brain. Here are a few examples:
- I took a bath before bed the other night. I put my bra on then my PJs and climbed into bed.
- I found the milk jug in the cabinet.
- I have washed my hair twice in the shower (instead of one wash and one condition) several times.
- I pulled the sheets off the bed, to put clean ones on, and somehow put the dirty sheets right back on.
- I was doing the dishes the other day and stood there dumbfounded. I couldn't remember where I put the silverware in the dishwasher (um, hello???).
There are many more ... :)
-
Saturday, February 5, 2011
Simon update
Thank you family and friends for helping us send strength and love to Simon. His marrow arrived in the early morning hours of Feb 4th, World Cancer Day. I think his mom said that of the 4 million people in the donor bank, there were 2 matches. Just 2. A 41 year old man in Germany donated to this sweet boy. The transfusion went well and he is now awaiting engraftment (the cells take up residence in the child's bones and begin to produce healthy blood cells). Simon's big battle has now begun...
Wednesday, February 2, 2011
Simon
Dear Friends,
When we were in the hospital during November and December, we had a room mate. His name was Simon. He has Acute Lymphocytic Leukemia like MJ, but a rare form of it. He has been fighting for 11 months, receiving high doses of chemotherapy (read: extremely not fun). Tomorrow Feb 3rd he will undergo a bone marrow transplant. I can not stop thinking about him.
If you are religious, could you please pray for him. We are not Christian, but we believe in a God, faith and the power of love.
If you are not, could you please strengthen your use of the Force and send Jedi Simon all your love, courage, tenacity and vitality. He needs it all. "The path of a Jedi is often difficult and filled with conflict and pain." He is in a major battle against the Sith this week.
His name is Simon.
He has Leukemia.
He is undergoing a Bone Marrow Transplant TOMORROW.
He is 6.
He is a Jedi.
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