Here is the rest of our story to date:
My sister-in-law, Kelly, drove me down to Maine Med where we beat the ambulance by seconds. Once she got there, Riker was admitted to the Pediatric Intensive Care Unity (PICU). Niether Kelly or I had gotten any sleep in nearly 24 hours and we were completely wiped. It was now Sunday, the longest day of my life. Kelly left late into the morning and I stayed by Riker's side through everything that day.
Throughout the entire day, experts attempted to find veins - they picked every vein they could find moving the needle all around for mintues trying to get an IV in her. She was going to need a lot of blood drawn for testing and a lot of blood transfusions to do so. She only had 1/3rd of the blood an infant her age should have. My strong baby with her powerful lungs screamed and screamed. Even while they picked at her, she'd occasionally wimper and fall asleep. She was so exhausted. Eventually, they had to have a nurse from the NICU come up and try - since she had more experience with babies, she was finally successful.
After taking care of our older daughter Valentine's needs, my husband, Jon, joined me at the hospital. In the eight years we have been together, I have never seen him cry. Not when his parents passed away, not when his father died last November of cancer. That day, I saw him completely breakdown into sobs over our youngest daughter's bed. Unfortunately, there have been many more times we've cried together since then and on this long, difficult jouney, I'm afraid there will be many more.
Late that afternoon, they decided they would sedate her for a couple of procedures. They needed to get a central line in her groin, they needed to check her spinal fluid for infection and cancer cells and they wanted to attempt to extract some bone marrow for testing. In order to do this, they had to intubate her which meant no more breastfeeding until they could extubate her again. Since she would be asleep, so Jon and I went back to tending to Valentine.
After the procedures, we learned that Riker did not have any infection or cancer in her spinal fluid. This was a big win as I do not believe they would have even treated her if they found cancer. They were unable to get the central line in her groin and had to go back in to put one in her chest. They were also unable to get any bone marrow but felt they could make due with her blood.
On Tuesday, we returned to the hospital to meet with the oncologist. Riker had Acute Megakaryoblastic Leukemia (AML M7). Over the next coming days, we would find out just how rare this particular form of leukemia is, especially in an infant so young. Typically, the disease is found in adults aging over 60. When found in children, the chances are improved of long term survival but they still have a poor prognosis. More often than not, children who are diagnosed with this specific form have Down Syndrom. For those children, chances of long term survival are marginally higher. The doctors suggest that Riker maybe a "mosiac" and that some of her cells have the extra chromosome found in people with downs. Blood has been sent out for testing - this is not likely but if she does have this anomaly, it will increase her chance of survival.
The oncologist did not seem hopeful but indicated it was worth trying to treat.
The oncologist we met with posed us with a difficult question, one which needed an answer immediately. Treat Riker at Maine Med or enter a clinical trial in Memphis, TN at St Jude's. The doctor could not tell us if the trial was even helping current patients and was not sure what she would do if she were in our shoes. She wasn't even certian that the medicine would not do harm. Of course, since it was a trial, we might not even get the additional medicine since there is only a 50% chance in any trial. The decision had to be made immediately as they needed to start chemo the next day and it had to be started at the proper hospital. As difficult of a decision as it was, Jon and I decided that the support of our family and friends, coupled with our need to give Valentine as much of a normal life as possible was more important - it was too big a gamble to risk it. Riker would continue to be treated at Maine Med.
On Wednesday, Riker was scheduled to start her chemo. The protocal the have her on is agressive - it's only one step away from what is needed for a stem cell transplant. Since she was still intubated and sleeping, we stayed with Valentine and did not go to the hospital. In the morning, the oncologist made one more attempt to obtain a bone marrow sample and was successful. In the afternoon, she began her first chemo treatment.
We also found out that day that our oncologist actually did his residency at St Judes. In his stay there, he treated 4 patients with similar diagnoses to Riker. He also indicated that there had been long term survivors. It felt good to have him in our corner.
Riker tolerated her chemo well but the first 48-36 hours after starting this protocal are critical. The doctors are always concerned that the chemo may not work. If the chemo does work, there can be complications as her system tries to process all of the dying cells. Since Riker's system was responding well to the chemo, she was creating an excess of uric acid. This can cause renal failure as the kidneys have to process all the waste or even worse, Tumor Lysis Syndrom (TLS). The doctors assured me that this balancing act was normal and good news - the chemo was working.
Over the last few days, Riker has shown that she's a fighter. She's passed the most critical hours of this chemo treatment with no fevers and no sign of infections and her system is processing the the dying cancer cells. Today, the oncologist called me and sounded nearly happy. Riker's swelling is finally going down and she is starting to pee. This is our first major victory in this journey and we are hoping she'll be off the ventilator as early as Monday. I know we still have a very long, difficult road ahead of us but, for the first day in nearly a week, I feel hopeful :)