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.

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.

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.

Tuesday, April 27, 2004

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.

I wanted to let you all know that I do use my site to also showcase other things besides just my posts. There is a link in to my twitter feed and also a list of books that I recommend though Amazon. I am working on reviews of these books so that they have a bit more relevance than me just linking to them.

Thanks again for reading. There are a bunch of posts coming up where I start to fill in info on my Leukemia Encyclopedia and more current history on Skeeter’s trauma-induced ADHD.

So, we are back at his normal doctor which is kinda nice. Our first visit back, Dr.A had a medical student with him who got to read Skeeter’s file about the just chance catch of his cancer. She was very surprised and it was neat to be a teaching moment for a young pediatrician.

We have been going there monthly for about 7 months now in order to get his trauma-induced ADHD under control with medication. (There will be more on that later). But of course, the current big scare is the h1n1 virus or swine flu. Skeeter has never had a flu shot and even us family member were discouraged from getting one while he was on treatment lest we get him sick with our reactions. He had been a little bit under the weather for the last visit, about 3 weeks ago, running a 99.5 fever on and off for a few days.

Normally such a temp would be a huge concern but we get to scale back our panic these days, with him being in remission and out of treatment for two years. Though, yes, we still went to both his pediatrician and Pediatric Oncology, where he got a full CBC to check his blood counts for infection. (So maybe not quite normal yet… )
The decision was made by Dr.A to give him the regular flu shot and also Tamiflu to fight it off right away. Luckily Skeeter will take any meds you ask him to, even if they taste bad. The doctor commented that he had seen a bunch of normal kids much sicker than Skeeter that day and they did not get medication but instead had to let their bodies fight it off the normal way. Skeeter doesn’t get that yet.

I got a call today from Dr.A’s nurse saying that the h1n1 vaccine is ready for their list of ‘High-Risk Patients’, which includes Skeeter but not his brother or me. I get to take him in on Friday to get it. I know that a lot of people have differing views on vaccination, especially for something like a flu or chicken pox – otherwise known as less-essential vaccines, but I will always be for them. They work because most of the population is vaccinated and honestly, having them helped saved Skeeter’s life. He had not finished the course of all of them and we were doubly lucky that his daycare required vaccines in all their other kids (with him being a exception due to the cancer) or else he would not have been able to attend since he was still partially susceptible.

It still means another run to the doctor… which seems to be our forever status. There will be monitoring and blood checks for the rest of his life – especially the rest of his childhood. I know that I just need to get used to it, but you look forward to the end of treatment so much and plan for less hospital in your life, but then, it is still there. Yes, it has decreased but it will not go away.

Lucky for me, my eldest son was an angel as baby. PJ cooed at the right moments and slept through the night at four weeks old. My mother did not have much to argue with eventually so she resigned herself to advising in stage whispers from the side. He was so cute and charming that we decided to have another. Skeeter was born when PJ was only 21 months old and he could have been an alien for how different he was than his brother. Nothing worked the same. He couldn’t tolerate this formula or that one. He didn’t sleep. My mother took this as a challenge to her parenting skills and began again to assault me with advice, articles and studies.

Nothing worked and I had a constant nagging feeling that there was something wrong with Skeeter but no real thing to base it on. But my mother and I fought over every little thing. She blamed his fussiness on me. She decided my desire to have music in the house was keeping him from sleeping. I was constantly defending my actions and pointing out that his brother was doing just fine in the same environment. I couldn’t figure out a way to get her to stop, so that we could have an actually conversation that didn’t involved her belittling my parenting skills or arguing over meals served. I was failing in her eyes.

Everything changed on April 7, 2004.

But it was cold crisp morning in December of that year that I was finally able to look my mother in the eyes and tell her it was over. Our paths as mothers had permanently split. She could no longer advise or ridicule my choices and actions. My territory was a completely different country and she had no reference or influence there. I was angry at the time and let my words fly out spitefully. The scene was utter chaos, just days before Christmas and Skeeter’s third birthday. I was sitting on the floor in my mother’s house, holding him down as he screamed and thrashed around trying to bite into my arms to add to the bruises that were already there. We had been like this for hours and I could tell that there was a fever mounting in him too. A fever. We were 140 miles away from home and a fever was one of the scariest things to happen. She had been watching us wrestle all morning without actually helping but shouting comments and antidotes at me from the kitchen.

I finally told her to shut up. I finally told her how worthless her advice had been and how now, it no longer had any relevance to my situation with my sons. Standing in her pristine clothes, full makeup and done-up hair she stared at me as I stared back in grungy clothes, messy hair and dirty face. I was bleeding at the time from Skeeter’s fingernail scratches on my face. I knew that forever I was going to catch hell for finally saying it but there was no way around it. All the advice in the world, well-meant or not, was not going to help me. She raised two healthy smart children in a world of playgroups, structured schools and manicured suburbia.

I was raising a child with leukemia.

Skeeter and Dad at Disney

Even though it is sort of a macabre type of humor, it is also a glimpse into our daily life. Think of getting stared at by strangers as you feed your child all the cookies and chocolate milk he will eat. You know that he hasn’t been hungry for days and the extra calories will give him fat enough to get through the next chemo without feeding supplements and the strangers see you celebrating the fact your child is plumping up on junk food. Two different worlds.

So here are more of my favorites of…

You know you are a parent of a kid with cancer when ….

• You’re the only mom in the grocery store reading the labels so you are sure to buy kiddie food with the MOST calories in it.
• Chemotherapy in the treatment room translates into “one hour naptime” for you… and you look forward to it.
• You don’t have anymore squirt guns because your 13yr old says he can shoot a lot farther and more accuratly with the 30ml syringes. (which is true!)
• Your child can tell you her temperature within .3 of a degree without a thermometer.
• With a 5 cc syringe in his hand, your child wants to play vet and chases the family cat under the table saying, “here kitty, you need a spinal tap now.”
• While spending a weekend with another cancer family, you overhear your 6-year old son & their 4-year old daughter discussing whether or not he took his 7½ pills, if she took her 6½ pills all at once and how many 6 mp tablets they each take.
• When you can tell the Intensivist exactly how much pentobarbital it takes to knock out your unsedatable 3 year old and exactly how and when to give it so she won’t wake up during the MRI.

People had every reaction under the sun, from shock to concern to outright scorn as if I had somehow caused this in my child. I hated telling people because I couldn’t stand their reactions. Sometime it felt judgmental and other times it made me feel like an outcast. The two worst things that anyone had said to me were, “Everything happens for a reason,” and “God never give us more than we can handle.” These are not appropriate things to say in this situation and honestly, you will get more than a tart response for such rude behavior. There is no justification for either of these so-called words of comfort. But what I hated most was the constant false sincerity that happened when people responded with the horrible phrase of “I know how hard this must be for you” or even worse, “I understand your pain.”

No, you don’t. Unless I have seen your sleepless body walking the Pediatric Oncology ward of the hospital, you have nothing in common with me. This is not the same as your mother battling breast cancer or your father’s colon problems. This is my child, who is barely two and a half years old, who doesn’t understand why we keep hurting him or not letting him go home. You don’t understand spending hours by his bedside watching to make sure he is still breathing because you fear he will just stop if you just close your eyes. Helpless. Hopeless. You instantly change your life to be able to handle the situation yet it doesn’t feel like enough. The eight month we spent over 94 days in the hospital. And by we, I mean me and Skeeter.

They give you numbers when you first hear the news. 85% is the famous one. Now compared to when I was child and leukemia was an instant death sentence, you start to think that 85% sounds pretty damn good. But that isn’t really the right number. That number is the percentage of kids who will survive for five years after being diagnosed. Diagnosed. This doesn’t mean five years after the three and a half year long treatment is completed. It means that fifteen percent either don’t survive treatment or they pass away within two years of completing it. The number that follows is the scary one. 64% of kids survive for ten years after diagnosis. They don’t really know what happens after that point. Each time there is a relapse the numbers get even smaller. Three relapses and they pretty much stop taking statistics. Many of the current treatment elements have no records or tracked long term effects. We could be making him sterile or causes heart failure years from now. I have no idea the long term effects of saving his life right now. But I can’t think on that.

I have held back the majority of my emotions and feelings in order to survive … and it worked to get all of us through those four years. But now, it is resurfacing. I find myself transported back to those hospital stay – re-remembering stuff that I never really committed to thought because I was pushing through. Now, I can get lost in flashbacks for hours and my tears are right on the surface. I am working through it – finally coping and grieving the loss of that time, the pleasure of my youngest son growing up normal and health, and the changes it made in both my personality, his personality and his brother. Part off all of us died and part of us altered in order to survive.