"Tilley and T"

When my second daughter was born I knew she was going to be something special. Julie, her older sister, had been such a great first child. Not that I was putting pressure on Alison. Being a second child, myself, and following after a pretty remarkable sister, I knew that there was a specialness to being second. Alison was every bit her own person. My father, who loved both granddaughters affectionately referred to Alison as "Tilley" (short for Attila the Hun). This was a good nickname for my spirited daughter who ran not walked at 10 1/2 months. Blonde "Shirley Temple" curls and cute as can be Alison showed very little of being intimidated by anyone or thing. She seemed to mirror the same self confidence that her sister Julie had, until she was taken to gymnastics camp. The fact that she loved to jump, run and stand on her head led me to believe she was perfect for Marvatots Camp. Two days in and the camp counselor said 'take her home'. She was miserable being left with strangers. She would get used to going to school and doing activities out of the house. Honestly, Alison always has been a very social person. Still to this day I have never felt she was anything but special (not in a paste eating way, of course).

When you are the mother of three very different and wonderful children, I think it is very easy to love each one for who they are. The fact that there were five and half years difference between the girls and seventeen and twelve years between Julie and Alison and their little brother, makes it feel as if they were only children. Yes, in everyday blend together situations comparing them is easy and is done. Who wouldn't say 'why can't you clean up your plate like your sister". Honestly, my oldest daughter, Julie, who is so confident and industrious is a very messy cook and her room should be declared a disaster area. Alison is very organized and abhors messes and is full of energy. Turner, well, he is an eleven year old boy. He is, I'm sure, not the messiest or dirtiest. He is an excellent student and unbelievably focused.

"T" or "T-man" as Turner is called at home is the third and only boy. He has grown up in a house of adults. He has an amazing vocabulary, is a phenomenal reader and an amazing tennis player. He respects women, which has saved his life in this family. His dad loves and respects women so I think Turner comes by it naturally. But he is such a boy. I grew up with an older sister. I went to an all girls school and an all woman's college. I like boys but they are different creatures. They are wired differently.

Alison was a "tom-boy". My husband always referred to her as 'his transition player'. She was active and good at sports. Julie has always loved to talk. She became an avid reader when she reached high school. She has loved cooking since she was three (still does) and as a little girl loved to get dressed up, go out to fancy restaurants, and plays etc. Alison would dress up reluctantly and would wear a pair of shorts underneath her dress just in case. Turner loves his suits, ties and sports jackets. However, now that he is in middle school he loves to look like every other 'tweener'.

Still all five of us live together under one roof. Many criticize and say it is not healthy. I disagree. Many cultures present and past have grown on the foundation of family staying together and thriving. The familly actually was the strongest bond people had until "nationalism " surged in the 1900's in Europe. I say to each family let them go their own way. Dinners are rarely dull. There is conversation about everything. Discussions abound and some, in the course of twelve years or so, have ended in anger. We are, I think, a close family.

It is May 2009. Ten months have come and gone since the APL diagnoses and nine from the devastating stroke. Only now am I beginning to see the toll of these two events on my family. It is not that I am dimwitted (perhaps I am). The reality is I have been consumed each day with Julie and her rehabilitation from the stroke and her regimen of arsenic treatments. I just have not had the energy or the time to think and reflect. During Julie's extended stays in the hospital for her cancer and stroke, Chuck's and my mindset was entirely different than normal. We lived from moment to moment. The only time I ventured to think and plan for the future was when Julie's situation seemed to stabilize. Then and only then could I breath easier and comfortably leave the present to focus on the future. This is a mode of thinking that after three months is hard to break. Furthermore, with Julie's rehabilitation being day to day we realize that results will come in months and years. This is a far cry from our instantaneous mindset of today's culture. So I offer this perspective as an explanation, perhaps, to why I have been so blind.

I walk around during the day thinking I am doing just fine. When in fact I am just surviving myself. I have Crohns disease. I have had it since I was 19. On good days I feel like I am coming down with "swine-flu". The worst days I feel like road kill on the side of 495. I also happen to be going through, what I hope, is the last stage of perimenopause. Not to make excuses, but as an old friend used to say "where ever you are going there you are". I hazard to say that I have not given too much thought to Alison and Turner. What's the saying "the squeaky wheel gets the oil".

My husband, Chuck, is a saint. He gets up every morning and gets Turner breakfast and takes him to school. He is the primary grocery shopper. He is the glue that keeps us together and makes every day work. Chuck is a cartoonist, writer and marketing consultant. His office is at home. Since October he has been scrambling to make up for all the time he lost at the hospital. To be perfectly honest I don't think he has given much thought to all that Al and Turner have been through.

The night of July 3rd, last year, I was very concerned about Alison and Turner going home late . I knew that they both were scared. I couldn't leave Julie nor could Chuck. At midnight Julie had still not received her first transfusion. This was now fifteen hours later from when the doctor had said she had to go to the hospital to get transfused. The nurses kept saying it was critical and the blood needed to be brought up to them right away. While this was going on I was aware how late it was and that Al and T needed to go home. I knew they would be ok. I never for once thought that Alison was not capable of taking care of Turner. I figured they both would sleep in our bed, which they did. It did not cross my mind that Alison was now the older sister. Julie has always been a second mother to Alison and Turner. Many times this was appreciated and other times not so much. Tonight Alison was on her own. With her father and me 'awol' at the hospital, Alison was the first line of everything for Turner. Turner is not entirely helpless. He actually is very capable of taking care of a nation let alone himself. However, he is the youngest of three and has taken the "princely order" that has been bestowed on him seriously. As the month of July wore on they were becoming fairly competent taking care of the house and the cats and themselves. We were fortunate that two weeks into Julie's cancer Turner's best friend and his family returned from camp and a trip. They became Turner's second family and were supportive and wonderful to Alison. Raymond, Alison's friend and friend of the family, took Turner on as a little brother. Chuck's parents were wonderful in picking Turner up from tennis camp and supporting him at matches. Neighbors were fixing meals for them and watching out for them when they came home at night. It was not like they were out in the world with no one. The two of them did very well taking care of each other. When things were very scary Turner asked Alison how to pray. I am not positive of the exact answer but I feel confident it was a good one. They learned to lean on each other and be strong for one another. The house and cats faired pretty well for an almost three months absence by me. Other than a gardenia tree that did not weather "the two blondes" everything else was good.

I believed when we brought Julie home from National Rehabilitation Hospital on September 18th that the hardest part of all of this was over. My family was back together and we could get through anything. Now eight months later I look back and realize the last eight months have been just as hard if not harder than the previous three. I totally misjudged what life would be like. A tumultuous roller coaster ride in a tornado would be smooth sailing compared to the emotions that have flowed in the past eight months. Seriously, if I had known then what I know now I would have gotten crash helmets and safety suits for the entire family and would have tethered each one of us down to something solid. I would also have made sure we had lots of wine. Each day has been filled with swirling emotions and venom that has flowed out from some deep spot inside that has been hidden forever. Women's hormones are fascinating and powerful. In the movie "The Mummy" the sky in the desert becomes the Mummy's head. All at once he inhales all the energy and power of the desert and exhales with unnatural and god-like power blowing and obliterating all that comes in its path. That pretty much sums up the energy of the last eight months.

Ten months and one day

Today is ten months and one day from the day of diagnoses for APL leukemia for Julie. It all seems surreal and still very vivid in my mind. At the time I did not truly understand how gravely ill she was. I was not in denial. I just knew she was going to get better and that was what I was focusing on. I took the information the doctor explained to my husband and me very seriously but always pulled out the positive points and hung on to them.

APL (acute promylecyte leukemia) is a very rare form of leukemia. Julie's doctor is well known in his field, highly respected and has been practicing for a long time. He had only treated one other patient in his career with this form of leukemia. The good news about this rare illness is that there is a very specific treatment. There is no trying this or that to see which treatment works the best on a patient. This disease has specific drugs and chemotherapy regimens. The results are good at putting patients into a remission and then keeping them in a "complete remission". They even have a specific regimen if a relapse occurs. So I was encouraged. Knowing what exactly is involved with this illness and the process of getting rid of it is very comforting when you have just survived the equivalent of a nuclear bomb being dropped on you.

Now, I knew my daughter was going to get seven days of heavy duty chemo (two kinds, ARA-C and daunirubicin). Along with these chemos, Julie would be taking what the medical proffession considers the 'life - saver drug' in this leukemia - ATRA ( all trans retinoic acid) which is a vitamin A derivative. The ATRA is in pill form and is responsible for turning the errant chromosomes 15 and 17 back to normal. You see they are the culprits in causing this leukemia. At some point, and no one knows why, these two chromosomes decide to transmute (meaning they go to the dark side upsetting your bodies healthy operation).

After the seven days of heavy duty chemo that I referred to as 'the big guns', Julie would remain in a private room until her blood counts improved. The chemo basically kills everything cancer as well as the good cells. There is no discrimination with chemotherapy. So her white and red counts would be very low. She would become neutropenic. This means she is unable to fight off any virus or bacteria. No fresh fruit or vegetables would be allowed until her counts rise. No fresh flowers and everyone has to scrub in before they can come into her room. This process to getting her blood levels up would take an agonizing two weeks or more.

She is allowed to go home for a month. Then starts the process all over again. The cycle is repeated : two weeks in the hospital in September; then home for a month, and repeats everything in October. At this point she is done with the induction treatments. While all of this is going on she continues to take the ATRA, for two years continuously.

Everything was clear. There was the plan. I knew she would get through everything and go into remission.

Twenty-five long days and she was able to come home. The family was back under the same roof again. Our "Bird" was tired but was on the mend. She lost her hair but I did not think she looked bad, kind of cute with her bandannas.

We took Julie back to the doctor four days after coming home. The doctor was pleased with her second bone marrow biopsy. It showed no large cell cancer cells. The chromosomes were still transmuted but that was to be expected. She was not to come back for 10 days just go home and build strength. All was going well.

Saturday morning she got up and made the family fresh blueberry pancakes and then got in painting clothes to help her sister paint their brothers bedroom.

We had weathered the storm and we were sailing into blue skies. Then the unthinkable happened. My daughter, Julie, had a massive right brain stroke and almost died from it.