This is how my 2.5 year old son with cancer, his older brother and I survived leukemia treatment and managed to reenter the real world over four long years. Just barely.
Childhood cancer occurs regularly, randomly and spares no ethnic group, socioeconomic class or geographical region. One in every 330 Americans develops cancer, during childhood or adolescence, before the age of 20. The cause of most childhood cancers is unknown and at present, childhood cancer can not be prevented.
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I have already talked on here about how hard it is for me to make long term plans; how a fire can uproot your head and how a young child being sick rearranges your reality and makes life a blur around you for years. I have talked a bit on the paranoia and trauma to all of us as well as the fact that we made it though pretty okay financially. I have already talked about the fact that I am still back there where it all started and am only now discovering ‘who I am’.
But I did not sit idle as all this happened. I still had to get us to survive and here is the start of that story – and a plan of where this blog is going.
After the fire in 2002, I was unhappy with where I was at in life so I took the time to think about it. It had brought all the small glints of problems to the forefront and I decided to act on the changes. I started divorce proceedings with my then husband (we were just much better friends than spouses) and went back to finish college at the age of 24. I was in the second semester of a Biology major with a minor in Mycology, when Skeeter got sick. I struggled to stay on top of my school work but honestly, organic chem and chemo don’t mix.
I was income for my kids – outside of school loans – so I had to keep trying to keep part time jobs for money while doing school for the insurance and to have some sort of future when this all finished. I took a semester off of the hardcore science and booked some easy theatre classes to help me recover my grades (as best I could) for the hardest part of his treatment. Luckily, I fell in love with the school work and best of all, with the costume shop that became home and teachers that cared. I bet if I had gotten to know the science teachers, they would have also cared but the path to get into their good graces was too long for me and their classes had no flexibility for attendance and sick kids (which I *do* understand).
 After other problems and many trials (including surgery for an abdominal hernia for me just weeks before the end of the semester, which I may get into later on), I managed to graduate with a BA in Costume Technology a few weeks before Skeeter finished treatment for leukemia. Not too shabby, I think. There was a move to MN in there where I spent most of a year building Muppets… but I ended up back in Madison, doing my own thing.
I am currently the proprietress of a Alt.Kilt: A custom built kilt company. I have been doing this solely for the past year and on and off before that since the winter of 2006 when I realized that I could sew a kilt for a friend. I have grown this business from scratch and am very proud of it.
I kept thinking on how to intersect the themes of childhood cancer and my current life and business. I don’t want this to be a plug for my company – and it is not – but I want this to be a blog about surviving, life, recovery and my family. I can’t talk about anything as a stand along subject because it is all intertwined and related. I am still the mom of a cancer kid and that shapes my reality just as much as being a proprietress of my own business does. I want this space to be able to cover all those things about me and my family that may be helpful to others and to myself. I don’t want things to be hidden away as unimportant or ’something people don’t talk about’.
Welcome to my home… I hope you find it interesting.
One of the first things you get in treatment is the ever present RoadMap. With our hospital, since it was a teaching hospital, they essentially did a coinflip to see what path Skeeter’s treatment would take because they have three different medical trials running at one time. We didn’t have a choice in the path nor did we have an option to not be part of a clinical trial and from what I have learned, this is the standard at all major hospitals (and that is where you want to be for such treatments anyway).
The fact that they track and record every child’s recovery is important and a wonderful way to do it. We opted out of some of the secondary studies – especially one that would require a second bone marrow aspiration each time he got one, mainly because I couldn’t stand to put a 2 year old though that twice in a row. But everything else was done in twos – two blood samples, two spinal samples… so that one was used to for his treatment and counts and the other was used as research.
The current standard treatment plan is called Children’s Oncology Study (COG) 1991 and for girls lasts 2 years and 2 months and for boys is 3 years and 2 months (provided there isn’t anything that sets the schedule back and there usually is something). The COG-1991 research study is named after the year it started and the data has been rolling in since then. It is being done because the older way of treating kids was not preventing relapses so these experimental routes were being tested to improve the standard treatment. We were given a 30 page document with the study information, drugs and possible side effects and the treatment road map.
The COG-1991 is the best plan out there right now for ALL. It is what is making the long term survival rates as high as they are – the hard part is that they have no real knowledge of the long term effects of this plan since the first children that were on it are only now in their early 20s.
We ended up on the standard treatment arm of the study and this was our schedule.
- Induction (1 month): Trying to force primary remission and kill as many abnormal cells in the shortest time possible – combination of three or four drugs via different methods are used.
- Consolidation (1 month): New combination of drugs to destroy any cancer cells that survived Induction.
- Interim Maintenance 1 (7 weeks): Lower dose chemo span to give the body a rest.
- Delayed Intensification (7 weeks): A secondary Induction phase to help kill remaining cancer cells that may have risen in number during Interim Maintenance.
- Interim Maintenance 2 (7 weeks): A small Consolidation and rest phase after the Delayed Intensification.
- Maintenance (until total treatment time runs at least 3 years and 2 months in boys): Lower doses that are less toxic and easier to tolerate for the long term killing of leukemia cells.
As we are all mostly familiar with, cancer is abnormal cell growth. There are hundreds of kinds of cancer and generally, kids get different kinds than adults. Unfortunately, cancers that happen to kids tend to occur in developing cells like the bone marrow, blood, kidneys and tissues forming the nervous system, whereas adult cancers happen more in organs such as the lungs or breasts. Treatments are chemotherapy – which is “systemic” or affects the entire body through the blood stream, and radiation – which is “localized” or directly placed on parts of the body such as tumors.
Leukemia- Cancer of the blood or blood-forming tissue. Leukemias are the most common type of childhood cancer. Types include:
- Acute lymphoblastic (or lymphocyctic) leukemia – known as ALL – which accounts for 75% of all leukemias. This was the first part of Skeeter’s dx.
- Acute non-lymphocytic leukemia, including myelogenous leukemia (AML) which accounts for 15-20% of all leukemias. Chronic myelocytic leukemia (CML) accounts for less than 5% of all leukemias and there are other even more rare ones in kids.
Information above from “Know Before You Go: The Childhood Cancer Journey” Handbook
As I stated up there – Skeeter had what the nurses call the “good” kind of leukemia – ALL. ALL is pretty good for treatment these days and the outlook is not that bad. This is just the first level of classifications though. They do genetic screening to check chromosomes and also visual screening of biopsied bone marrow to come up with a long diagnosis.
More officially his diagnoses is Early pre-B cell acute lymphoblastic leukemia with TEL-AML1 fusion..
There are two lines of leukemia cell in ALL: B cells and T cells. 80-85% of all ALL children have B-lineage with one or more of the common antigens (which are proteins on the surface of the cells). The different levels of the maturity of the B cell lineage tells the doctors how the treat the leukemia. Early pre-B is the most common – 3/4 of children with ALL have this lineage and this is the best prognosis of all the different types of ALL. The TEL-AML1 fusion is a movement of the TEL gene on chromosome 12 to the AML1 gene on chromosome 21 and children with this translocation usually have a favorable outcome.
There is so much that can been seen on a microscopic level these days and that has really helped the survival rate soar.
There is apparently a big difference between being mentally able and ready to talk about trauma and emotionally being able to do it. I was raring to go and it got the better of me. I had hoped I was far enough away from the blast zone by now – I think I am moving towards that but am not completely there yet.
I am back though – from my self-imposed hiatus.
It is awkward at 30 to be going through a self-identity phase but with kids, illness and fires, I missed doing it in my twenties. I was trying to survive instead of ‘find myself’ and now, I am trying to learn who I am. Seems like an odd thing for a mother of two who is a few years into her own business and pretty settled in location and finances… but it is true. It feels like a part of me is paused back when I was 24 and is just waiting for me to hit the play button so I restart that life that change out from under me. I ~know~ that I can’t go back to that person because she no longer exists but I wish I could, some days.
This blog is going to serve as all aspects of my identity. My past – which shaped me… My present – which moves me… My future – which gives me hope.
Here is an old journal entry about Skeeter hitting remission.
Tuesday, April 27, 2004
- White Cell Count: *** (Normal = 4.0 – 12)
- Hemoglobin: 10.0 (Normal = 11.5 -14.5)
- Platelet: 159 (Normal = 160 – 370)
- ANC: 3860 (Normal = 1400 – 6600)
YEAH! It is official… Skeeter is in remission. His last draw came up at less than 3 leukemia and his body is really starting to heal up. Both his platelets and ANC are at a treatment high. He also received his vincristine (chemo) in his IV. He has officially gained 4 pounds in the last week too… wow, those steroids sure work fast! Skeeter now weighs more than his four-year-old brother.
He will have another sedation clinic next week with a spinal tap and chemo only. The next phase of treatment is the consolidation phase and it should begin next week as long as his platelets are over 100 and his ANC is over 1000. Consolidation uses high-dose chemotherapy to attempt to kill any remaining leukemia cells. This phase will also mean a change in medicines since he will be getting more of his chemo at home orally.
Remission in blood cancers is achieved when the number of leukemic cells in the blood draw are less than 3. They hope to achieve this number within the first 28 days of treatment – if it is not achieved in that time frame, then the leukemia is considered to be of a stronger hold and there is a different treatment path taken. Skeeter hit that number at day 20. ~whew~ This is still only the first 20 days of a 3.5 year treatment plan so it is considered by most parents as the first remission”… because, to the outside world, it doesn’t mean what it means to you.
When talking with people who don’t have experience with blood cancers, the term remission usually reference a completion. Done with chemo – clean bill of health at this point. For us, it just means that the doctors managed to get it under control and now we have to get through the next 3.5 years in order to eradicate it from his entire little body. That is the hard part. Most parents, and I did this too, will refrain from saying that they child is in remission until treatment is completed. The common phrasing is “Skeeter is in treatment for leukemia and things are going well.” As much rejoicing that happens when this first remission is achieved… it is not the end and it just barely betters your fortune.
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After other problems and many trials (including surgery for an abdominal hernia for me just weeks before the end of the semester, which I may get into later on), I managed to graduate with a BA in Costume Technology a few weeks before Skeeter finished treatment for leukemia. Not too shabby, I think. There was a move to MN in there where I spent most of a year building Muppets… but I ended up back in Madison, doing my own thing.