Tomorrow Elizabeth begins Phase 2 of her chemotherapy treatments. Here's the schedule over next few weeks (This is just half of Consolidation).
11.27.2012 | Day 1- Port placement, LP (Lumbar Puncture, or Spinal Tap) ITT chemo (chemo into spinal fluid), IV chemo, admitted to hospital overnight
11.28.2012 | Day 2- IV Chemo before being released from hospital
11.29.2012 | Day 3- IV Chemo @ clinic
11.30.2012 | Day 4- IV Chemo @ clinic
12.4.2012 | Day 8- LP ITT chemo, IV chemo @ POPS (Pediatric Outpatient Surgery)
12.5.2012 | Day 9- IV Chemo @clinic
12.6.2012 | Day 10- IV Chemo @ clinic
12.7.2012 | Day 11-IV Chemo @ clinic
12.11.2012 | Day 15- LP ITT chemo, IV chemo @ POPS
12.18.2012 | Day 22 - LP ITT chemo, IV chemo @ POPS
11.26.2012
A New Normal | ANC
ANC= Absolute Neutrophil Count
Elizabeth's ANC is a number that we live by right now. It is a guide to determine Elizabeth body's ability to fight infection.
Some things about ANC
Elizabeth's ANC is a number that we live by right now. It is a guide to determine Elizabeth body's ability to fight infection.
Some things about ANC
- A normal ANC is between 1,200 and 7,650
- ANC 1500-1000 is mild neutropenia (somewhat increased risk of infection)
- ANC 1000-500 is moderate neutropenia (moderate risk of infection)
- ANC less than 500 is severe neutropenia (serious risk of infection)
- ANC 750-1000 or higher: able to receive the next course of chemotherapy
Here's Elizabeth's history of ANC
- 10.21.12 - 0
- 10.23.12 - 40
- 10.28.12 - 40
- 11.12.12 - 90
- 11.19.12 - 250
Today we had an appointment at the clinic to go over the next phase of Elizabeth's treatment. They did a blood draw to check where her ANC is at to determine if we can go ahead as scheduled to start Phase 2 tomorrow. Her ANC needs to be 750 or higher before the start the next course. Before the end of the visit we got news that her ANC is at 810. Elizabeth is ready for Phase II.
11.21.2012
Wonderful News!
We received some great news this morning from one of Elizabeth's HemOnc (Hematology/Oncology) doctors. The bone marrow aspirate they did on Monday indicated that Elizabeth is in remission! Remission means that there is less than 5% blasts (immature and poorly formed blood cells) in Elizabeth's blood. The technical term for Elizabeth's results is that her MRD (Minimal Residual Disease) is 0, indicating the first phase of chemo has worked well!
This however does not mean that she is cured, if they stopped chemo now, then about 99% of the time the cancer would return. What makes us so excited is that these results mean that Elizabeth will not be elevated from the High Risk to the Very High Risk treatment plan.
We will celebrate each milestone with Elizabeth, so today we had a really nice time at the 'Animal Zoo' to celebrate Elizabeth's remission. We got to see foxes, otters, a wolf, penguins, and monkeys. We really enjoyed the fresh air, sunshine, and unseasonably warm weather. It has been especially great to see Elizabeth regaining strength and wanting to play more lately.
Next week Elizabeth is scheduled to get a port (a small injection site placed beneath her skin in her chest that goes to her heart) to replace her PICC (peripherally inserted central catheter) line. Elizabeth has affectionately called her PICC line her "tails" because the double lumen PICC has two tubes that come out of her arm near the inside of her elbow and hang down to her hand. She is very adaptive and resilient, coming to enjoy us "cleaning her tails" (flushing her PICC lines with heparin twice a day and changing the orange caps). She won't miss the weekly dressing changes for her PICC line though :)
Depending on Elizabeth's ANC levels, in the next week or two we will start the second phase of chemotherapy.
We are very grateful to all of our family and friends for their thoughts and prayers, as well as their acts of love, generosity, and kindness. Thank you for help lightening our burdens as we go though this chapter in our lives and start a new one with the next phase of chemo.
Happy Thanksgiving from the Baldus Family.
This however does not mean that she is cured, if they stopped chemo now, then about 99% of the time the cancer would return. What makes us so excited is that these results mean that Elizabeth will not be elevated from the High Risk to the Very High Risk treatment plan.
We will celebrate each milestone with Elizabeth, so today we had a really nice time at the 'Animal Zoo' to celebrate Elizabeth's remission. We got to see foxes, otters, a wolf, penguins, and monkeys. We really enjoyed the fresh air, sunshine, and unseasonably warm weather. It has been especially great to see Elizabeth regaining strength and wanting to play more lately.
Next week Elizabeth is scheduled to get a port (a small injection site placed beneath her skin in her chest that goes to her heart) to replace her PICC (peripherally inserted central catheter) line. Elizabeth has affectionately called her PICC line her "tails" because the double lumen PICC has two tubes that come out of her arm near the inside of her elbow and hang down to her hand. She is very adaptive and resilient, coming to enjoy us "cleaning her tails" (flushing her PICC lines with heparin twice a day and changing the orange caps). She won't miss the weekly dressing changes for her PICC line though :)
Depending on Elizabeth's ANC levels, in the next week or two we will start the second phase of chemotherapy.
We are very grateful to all of our family and friends for their thoughts and prayers, as well as their acts of love, generosity, and kindness. Thank you for help lightening our burdens as we go though this chapter in our lives and start a new one with the next phase of chemo.
Happy Thanksgiving from the Baldus Family.
Leukemia | Doctor's Notes
Here is some information about Elizabeth's diagnosis and treatment that was explain to us at the very beginning of treatment. This is from the doctor's notes....
Here is the notes about Elizabeth's treatment....
- Elizabeth has Acute Lymphoblastic Leukemia (ALL)
- It's cancer of the blood
- It is fatal without treatment
- With treatment chances for 5 year disease free survival (cure) is ~76%-90%
- Treatment depends on the risk category
- Risk category is determined by two criteria
- White Blood Count (WBC) at first lab draw
- Standard treatment when WBC is less than 50,000
- High risk treatment when WBC is above 50,000
- Age
- More than 10 years old is High Risk
- Even though Elizabeth is less than 10 years old, because her WBC was 76,000 at the first lab draw she is in the High Risk category.
- They also look at the type of cells. T-cells or B-precursor cells. Elizabeth's is B-precursor.
Here is the notes about Elizabeth's treatment....
- All ALL patients receive chemotherapy
- Chemotherapy is the front line perscription
- Chemotherapy are drugs that kill cancer cells
- Treatment for ALL is a long duration
- 2 1/2 years for girls
- First 6 months most intense
- Four phases of treatment
- Phase I - Induction (Induce Remission) with chemotherapy
- 4-6 weeks long
- 95-98% in remission by end of Phase I
- Remission means less then 5% Blasts (immature cells) in bone marrow
- Phase II - Consolidation
- 4-6 weeks
- Interim maintenance for 6-8 weeks long
- Phase III - Reintensification
- 6-8 weeks
- Phase IV - Maintenance
- Oral chemotherapy
11.20.2012
The End of Phase I
It's early yesterday morning, and I hear Brian quietly get ready for the day. I roll over, half asleep, and ask if he would like me to drop them off. It's another day for Elizabeth to go to the hospital. But in a way this day is different. It doesn't seem that big, but it is. It's the end of Elizabeth's treatment for Phase I.
Brian is sweet and tells me to sleep in. He will figure it out. So I roll over to catch up on so many hours of missed sleep. It's a little restless, but I feel much better hours later. I am so grateful for more rest.
By the time I get up, Elizabeth's procedure is almost done. I get to talk to Brian and Elizabeth on the phone. Elizabeth is so sweet! One of the drugs they gave for the sedation make her so relaxed and happy.
By time I go in to trade places at the hospital with Brian in the afternoon, Elizabeth has fallen back to sleep. We just need to wait for some medication to clear her PICC lines. I enjoy watching my childhood shows like 'Bugs Bunny' and 'Tom and Jerry.' Elizabeth sleeps on.
Her lines are clear again, we can go home. Elizabeth still sleeps, so we order a wheelchair. Elizabeth finally wakes up when I pick her up to go home. We are wheeled out of the hospital together.
We have finished the first Phase of chemotherapy. We have made it through the first month. They have taken part of Elizabeth's bone marrow for testing. We now wait for the results.
Brian is sweet and tells me to sleep in. He will figure it out. So I roll over to catch up on so many hours of missed sleep. It's a little restless, but I feel much better hours later. I am so grateful for more rest.
By the time I get up, Elizabeth's procedure is almost done. I get to talk to Brian and Elizabeth on the phone. Elizabeth is so sweet! One of the drugs they gave for the sedation make her so relaxed and happy.
By time I go in to trade places at the hospital with Brian in the afternoon, Elizabeth has fallen back to sleep. We just need to wait for some medication to clear her PICC lines. I enjoy watching my childhood shows like 'Bugs Bunny' and 'Tom and Jerry.' Elizabeth sleeps on.
Her lines are clear again, we can go home. Elizabeth still sleeps, so we order a wheelchair. Elizabeth finally wakes up when I pick her up to go home. We are wheeled out of the hospital together.
We have finished the first Phase of chemotherapy. We have made it through the first month. They have taken part of Elizabeth's bone marrow for testing. We now wait for the results.
11.19.2012
Leukemia | The Backstory - Part II
Before we went to see Elizabeth's doctor, I decided that I should record a list of all the symptoms Elizabeth had. I didn't want to forget anything. This is the list I came up with for the doctor...
The doctor came in and we further discussed the symptoms and talked a little about possibilities. He then took a look at her and we talked some more. He then took a look at her and we talked some more. At first he was telling us to go to a lab for some tests, but after examining Elizabeth and talking more he told us to take her to Sparrow hospital's ER. He wanted answers that night. As we were leaving the office he told us we may be staying overnight.
So off we went. We went through a drive-thru And stopped at home to grab overnight bags for us all just in case. Then it was to the hospital we went.
Lots of poking, prodding, testing, and talking went on for the next few hours. We are so grateful for the 'Curious George' movie that helped distract Elizabeth as best as possible that night. After 10pm the ER doctor came in and that is when we first heard Leukemia.
- Fatigue (not wanting to walk, play)
- cracked, bleeding lips
- blood in stool and diaper
- rash (skin, tongue, inside of cheek)
- trouble sleeping at night
- loss of appetite
- pale
- bruising
- cranky
The doctor came in and we further discussed the symptoms and talked a little about possibilities. He then took a look at her and we talked some more. He then took a look at her and we talked some more. At first he was telling us to go to a lab for some tests, but after examining Elizabeth and talking more he told us to take her to Sparrow hospital's ER. He wanted answers that night. As we were leaving the office he told us we may be staying overnight.
So off we went. We went through a drive-thru And stopped at home to grab overnight bags for us all just in case. Then it was to the hospital we went.
Lots of poking, prodding, testing, and talking went on for the next few hours. We are so grateful for the 'Curious George' movie that helped distract Elizabeth as best as possible that night. After 10pm the ER doctor came in and that is when we first heard Leukemia.
11.08.2012
A New Normal | Transfusions
I think when I used to hear transfusions I would think that meant something was seriously wrong. If funny that now when Elizabeth gets another transfusion it feels so routine. Since we first took her to the hospital she has had multiple transfusions of blood and platelets. I really have lost count how many she has gotten, but I know that since Sunday she has had a full platelet transfusion and then a blood transfusion yesterday. With the treatment she is getting this is normal for her to need these transfusions.
I am not one that can handle donating myself (yet), so I am so grateful to the people that do donate. It amazes me the way that a gift of a transfusion can perk Elizabeth up. It was after receiving her first transfusions that Elizabeth finally wanted to play. I got teary eyed because it had been weeks since she had wanted to play.
I am not one that can handle donating myself (yet), so I am so grateful to the people that do donate. It amazes me the way that a gift of a transfusion can perk Elizabeth up. It was after receiving her first transfusions that Elizabeth finally wanted to play. I got teary eyed because it had been weeks since she had wanted to play.
11.03.2012
A New Normal | Discovery
Leukemia came into our family's life, and changed it forever. When we heard Elizabeth had Leukemia we knew we could not go on living our life as we were. If we ignored the diagnosis and took her home, she would die. That was not an option for us. So we decided we had to find our new normal.
We knew there were going to be changes. We would learn a new vocabulary. We would see many doctors, nurses, and other medical personnel. There would be medicine, tests, treatments, etc. I would have to become the nurse I never wanted to be. This is part of our new normal.
We knew there were going to be changes. We would learn a new vocabulary. We would see many doctors, nurses, and other medical personnel. There would be medicine, tests, treatments, etc. I would have to become the nurse I never wanted to be. This is part of our new normal.
11.01.2012
Doctors, nurses, hospitals, oh my!
Elizabeth is back at the hospital tonight. She has been constipated since Monday, and they do not like that. It can cause infections and with her immune system so low we don't want that.
It's so hard to have to take her back. It was two weeks ago today that we first took her to the hospital, and then stayed for 8 days. The day after she was released (Saturday), one of her PICC line 'tails' got clogs, so it was back to the hospital for a few hours. Sunday we took her to the clinic for a lab draw, Monday she went to the hospital for chemo, and Tuesday she had an appointment at the clinic.
We were so happy when Wednesday came. Wednesday meant no doctors. Wednesday meant no nurses. Wednesday meant we could just stay home together without any medical personnel. We liked Wednesday.
Then Today it was back to the hospital.
It's so hard to have to take her back. It was two weeks ago today that we first took her to the hospital, and then stayed for 8 days. The day after she was released (Saturday), one of her PICC line 'tails' got clogs, so it was back to the hospital for a few hours. Sunday we took her to the clinic for a lab draw, Monday she went to the hospital for chemo, and Tuesday she had an appointment at the clinic.
We were so happy when Wednesday came. Wednesday meant no doctors. Wednesday meant no nurses. Wednesday meant we could just stay home together without any medical personnel. We liked Wednesday.
Then Today it was back to the hospital.
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