We're really proud of Francesca right now. She left for Italy yesterday. Traveling alone, she transited the airport in Zurich, got a new boarding pass, went through security (with diabetes supply filled backpack), and got to her gate on time to make the connection to Venice.
She was met at the airport by our friends the Palomos and we received an email entitled "The Eaglet has landed". Let the fun begin in Italy.....and let the peace begin at home :)
Before the Eaglet made her maiden voyage across the ocean, Carson went to the clinic for a counts check. ANC is up, but dosage of 6MP and Methotrexate is going down.
Dr. L is referring to this particular dosing schedule as homeopathic because he'll be getting so little of the chemos. To be exact, 1/4 tablet of the 6MP - a new record for us and just 2 tablets of methotrexate (also a new record). What can we say? The boy is sensitive to the meds, even the small doses effect him.
We go back again to see how the current dose is working out. If counts are still down, we are considering just sprinkling him with 6MP dust and calling it a day......!!!!!
-Jennifer
Wednesday, June 29, 2011
Tuesday, June 21, 2011
The Return of Mr. Low Counts
I thought Mr. Low Counts would be away for awhile. I thought he would take a nice vacation to some place called "preschool". I thought I might be able to clean out a closet or two and possibly the playroom while he was absent. I even dared to think I might have a moment or two to myself and a chance to string two thoughts..... in a row...... together.
I thought wrong.
Mr. Low Counts loves me. He wants to stay with me always. As he says, "I'm Mama's Boy". As if to highlight his determination to remain, Mr. Low Counts became Mr. Very Low Counts. (ANC 190)
Mr. VLW, as he will now be referred to as, does have one thing going for him though. He's pretty cute and knows just when to throw in an "I love you Mama". How can I be upset??
Just how permanent is Mr. VLW?? We will find out next week when we return to the clinic. In the meantime, we'll have more quality and quantity time together.
-Jennifer
I thought wrong.
Mr. Low Counts loves me. He wants to stay with me always. As he says, "I'm Mama's Boy". As if to highlight his determination to remain, Mr. Low Counts became Mr. Very Low Counts. (ANC 190)
Mr. VLW, as he will now be referred to as, does have one thing going for him though. He's pretty cute and knows just when to throw in an "I love you Mama". How can I be upset??
Just how permanent is Mr. VLW?? We will find out next week when we return to the clinic. In the meantime, we'll have more quality and quantity time together.
-Jennifer
Wednesday, June 15, 2011
Moving Up
Another day, another transition....
This time it was Francesca. She is officially NOT a middle schooler anymore; she is a high schooler, at 8th grade no less. (That's the way they do it here in our Little City)
Since Mary Ellen Henderson Middle School is now a thing of the past, there was a Moving Up Ceremony to mark the occasion. There was "pomp, circumstance " and one little brother to really embarrass her.
"The Official Moving Up Handshake"
Right before the ceremony, Carson performed his brotherly duties when he waved and waved and waved at Francesca. Then in his best stage whisper said "Sissy (no response from Francesca)....Sissy (again no response)......Sissy (she does her best to ignore him) .....bolus." (Reminding her to administer her insulin is one of his greatest joys in life) Francesca was not too pleased, but a lot of people sitting around us thought otherwise.
At the After Party......the stress of 7th grade behind her, Francesca cracks a smile
This time it was Francesca. She is officially NOT a middle schooler anymore; she is a high schooler, at 8th grade no less. (That's the way they do it here in our Little City)
Since Mary Ellen Henderson Middle School is now a thing of the past, there was a Moving Up Ceremony to mark the occasion. There was "pomp, circumstance " and one little brother to really embarrass her.
"The Official Moving Up Handshake"Right before the ceremony, Carson performed his brotherly duties when he waved and waved and waved at Francesca. Then in his best stage whisper said "Sissy (no response from Francesca)....Sissy (again no response)......Sissy (she does her best to ignore him) .....bolus." (Reminding her to administer her insulin is one of his greatest joys in life) Francesca was not too pleased, but a lot of people sitting around us thought otherwise.
At the After Party......the stress of 7th grade behind her, Francesca cracks a smileTransition back.....
In other news, Carson's counts are back up somewhat. Yesterday he came in with an ANC of 630 after the manual count - a little lower than expected considering he hasn't had any chemo for a week - but high enough to restart 6MP and Methotrexate.
If you're thinking that the restart of the oral chemos will be at a reduced rate, you'd be right. His doc would rather him have something rather than nothing (and we agree). So here we go again.....I swear sometimes I'm living in an episode of "Groundhog Day", only this time, there is no cute ground hog, there is nowhere to hide when I see my shadow; and the humor has a definite medical component.....This story line, I believe, would not translate well to the silver screen.
Carson could have cared less about all the talk of counts and chemo; he was busy with Legos. Mrs. Margy gave him "6 year old Legos" while we were there and he was so proud that he put it together (with some help). He talked all the rest of the day about how he is 5, but he put together Legos for 6 year old boys.
Next week we're due for Vincristine, Pentamadine and yet another round of steroids. Carson is already thinking he'll need more 6 year old Legos to keep him busy.
Have a great weekend!
-Jennifer
In other news, Carson's counts are back up somewhat. Yesterday he came in with an ANC of 630 after the manual count - a little lower than expected considering he hasn't had any chemo for a week - but high enough to restart 6MP and Methotrexate.
If you're thinking that the restart of the oral chemos will be at a reduced rate, you'd be right. His doc would rather him have something rather than nothing (and we agree). So here we go again.....I swear sometimes I'm living in an episode of "Groundhog Day", only this time, there is no cute ground hog, there is nowhere to hide when I see my shadow; and the humor has a definite medical component.....This story line, I believe, would not translate well to the silver screen.
Carson could have cared less about all the talk of counts and chemo; he was busy with Legos. Mrs. Margy gave him "6 year old Legos" while we were there and he was so proud that he put it together (with some help). He talked all the rest of the day about how he is 5, but he put together Legos for 6 year old boys.
Next week we're due for Vincristine, Pentamadine and yet another round of steroids. Carson is already thinking he'll need more 6 year old Legos to keep him busy.
Have a great weekend!
-Jennifer
Thursday, June 9, 2011
Mr Low Counts
Today's clinic visit:
Dr. L: "Any aches, pains, fever, diarrhea or constipation?"
Me: "No"
Dr. L: "Has he been taking his 6MP and Methotrexate?"
Me: "Yes"
Dr. L: "Religiously?"
Me: "Yes"
Dr. L: "I can tell"
We are neutropenic again....ANC of 490. No school, no pool, no chemo, come back in a week.
A new twist developing to this scenario though....as Dr. L says "we have busted protocol"
Usually, when we are neutropenic, Carson's dosage is dropped in half, his counts rise too high and then we try and up the chemos, only to have counts crash again. This time, we're only going to lower his dosages by 10% or so and see what happens. Maybe a happy medium, lurking out there somewhere ???
Until then, just call Carson "Mr. Low Counts"
Dr. L: "Any aches, pains, fever, diarrhea or constipation?"
Me: "No"
Dr. L: "Has he been taking his 6MP and Methotrexate?"
Me: "Yes"
Dr. L: "Religiously?"
Me: "Yes"
Dr. L: "I can tell"
We are neutropenic again....ANC of 490. No school, no pool, no chemo, come back in a week.
A new twist developing to this scenario though....as Dr. L says "we have busted protocol"
Usually, when we are neutropenic, Carson's dosage is dropped in half, his counts rise too high and then we try and up the chemos, only to have counts crash again. This time, we're only going to lower his dosages by 10% or so and see what happens. Maybe a happy medium, lurking out there somewhere ???
Until then, just call Carson "Mr. Low Counts"
Monday, June 6, 2011
Pie
The beginning of June has us marking a special occasion: Carson has not had to visit the Emergency Room in two months now! Yipee!!
We still don't have his oral chemo dosages figured out; but that is easier to take when you're not heading to the ER once a month.
In other news: We had a quiet Memorial Day Weekend - even with a swim meet. We enjoyed visiting with our church friends and neighbors.
The highlight of the weekend was Francesca's decision to participate in the pie eating contest at the Student/Parent Cookout at church. She attempted to represent the 7th grade to the best of her ability; but alas, found out she doesn't like pie very much! So, her career as a professional eater is over before it started!
Go Francesca!
Say hello to Francesca's new profile picture for Facebook!
We still don't have his oral chemo dosages figured out; but that is easier to take when you're not heading to the ER once a month.
In other news: We had a quiet Memorial Day Weekend - even with a swim meet. We enjoyed visiting with our church friends and neighbors.
The highlight of the weekend was Francesca's decision to participate in the pie eating contest at the Student/Parent Cookout at church. She attempted to represent the 7th grade to the best of her ability; but alas, found out she doesn't like pie very much! So, her career as a professional eater is over before it started!
Go Francesca!
Say hello to Francesca's new profile picture for Facebook!Have a great week everyone! We will be at the clinic on Thursday this week for a counts check.
-Jennifer
-Jennifer
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