Precious Kya Bliss came into the world on January 28th at 6:48pm weighing 3lbs, 11ounces at Wellington Regional Hospital, just north of our home in Boynton Beach, FL. She followed her twin "big" sister, Jasmin Love, who arrived three minutes earlier. Kya's delivery was described as the cork popping out of a champagne bottle because she flew out to this world. The girls were born to us at 36 weeks. It was great knowing they had made it that far along. The delivery went very smoothly and both girls were welcomed into our loving arms. But after a 15 minute snuggle with Mommy, Kya was brought to the NICU. Although she came out with full lung development and no respiratory problems, due to her size she needed to be monitored and helped with feeding and growing. She was a fighter from the moment she popped into this world. She continued to grow through feedings and breast feedings and we spent much time with her there. I pumped breast milk for her so that she received breast milk through her bottle feedings and she breast fed when I visited her. It was so special. Kya quickly met her NICU goals and after one week she was able to join everyone at home. What a reunion and such a special time for us to finally have our family of 4 under one roof!! Once home, there was a shortage of sleep, but so much love and excitement, and they were truly two wonderful blessings to Mommy and Daddy. There was hardly a routine with twins, but it was amazing.  The girls finally both started to gain some weight and worked mommy hard by breast feeding around the clock. They had beautiful personalities and we always noted how Kya was so actively alert and had such big beautiful discerning eyes.    On March 25, 2010 we had our standard 8 week well baby visit. During the appointment the Pediatrician was happy with weight gain and development and they received vaccinations. Our doctor had the girls taking an iron supplement vitamin since birth because they were 4 weeks premature and needed extra iron in the beginning. He had checked their iron levels at 4 weeks and everything looked fine but they continued on the iron vitamin. I decided to ask the doctor if we could stop giving the iron or if they still needed it. He said he would run a blood count (CBC) to check their iron levels. When the results came back, the doctor hesitated over Kya's and ran it a second time.  It was this blood work that revealed Kya's white blood cell count (WBC) at 54,000 and a normal newborn is between 8,000 and 12,000. 

Then the whirlwind began...

We were immediately sent to the closest hospital with a Pediatric ICU, Palms West hospital in Loxahatchee, FL. This set us in a panic considering we had two babies who were 8 weeks old and I was breastfeeding both girls.  I had never been apart from either girl and now had to be apart from Jasmin. My mom came down from Stuart and took care of Jasmin while we went to Palms West. Once there, doctors ran more blood work and confirmed the high WBC and did her first round of x-ray's. Since it was late by the time we got there and there were no hematologists or oncologists available, we had to wait until the next morning for more information and results and testing. We bunked in her room and just held her tight. They did a bone marrow aspirate Friday afternoon March 26 and we were told we would have results by late afternoon or early evening.  Evening came and went and we had no results.  The lab must not have processed it on a Friday afternoon. By Saturday morning Pavan and I were constantly asking the Oncologist and her nurse to get the results for us!  By this point we were all very scared and still grasping on to hope that it was just some crazy fluke in Kya's labs and she was perfectly fine.  Or that she had some strange infection; although that was very unlikely because she had to infection symptoms. Finally the ICU doctor and a nurse came into the room.  He said the oncologist was on her way in to speak with us but that Kya's bone marrow aspirate showed that she has leukemia‚Ķ... Our worst nightmare and nothing any parent ever wants to hear and we wish no parent had to.  We broke down.  Neither of us could stop crying and just didn't even know what to do.  Our precious, innocent baby girl Kya was so very sick and we could do nothing about it.  Oh, we would have given our lives right then and there if we could! The head oncologist came to our room about an hour later and sat us down to discuss more details.  She told us that she had contacted St. Jude Children's Research Hospital in Memphis, TN where they had a special infant track to their Acute Lymphoblastic Leukemia (ALL) protocol.  They wanted us flown there immediately. The oncologist here had never seen or treated a baby this young and wanted us to go where there are the top doctors researching this disease. We were put in touch with St Jude patient service team immediately to work out details.  Since there was no flight that could get us there by early evening and because Kya was getting her first blood transfusion, we were booked on a flight out first thing Sunday morning March 28, 2010.  We had no idea what was ahead of us or what this infant ALL protocol entailed or where our lives were headed now.  We raced home to pack the girls bags and my bags and try to just put one foot in front of the other. We had no idea if we would be gone a month, 6 months, a year, or longer.  And Pavan was set to start a brand new job the next day.  All we could do was look at pictures of our baby girls from our first 8 weeks of life and cry.  Our beautiful, bright eyed Kya had a very deadly disease and had never even harmed a flea. We were only just starting to breathe from having a chaotic life with twins. We had so many visions for our two little girls together. Within 24 hours after arriving at St Jude, Kya had surgery to get her central line placed from her jugular into her venous system and out through her chest so that she could receive all her meds, chemos, and blood draws without having to access a peripheral vein each time.  She also had a bone marrow aspirate to confirm just how many leukemia cells were in her blood and a spinal tap to look for leukemia in her spinal fluid.  All this at just 5lbs, 5 oz. She received anesthesia and had her first chemo administered into her spine and then came out of surgery to get her IV chemos.  This first day was rigorous.  She received 5 chemos.  Later that day we got the bad news that not only did Kya have over 70% leukemia cells in her bone marrow, but she also had leukemia in her spinal fluid, and she had the MLL gene rearrangement which meant she would have to receive even more chemo and had worse odds against her in beating this beast.  Thankfully all her organs were just perfect and her EKG showed that her heart is just perfect. What was always so amazing from the first encounters with nurses and doctors was that they all commented on how she was a feisty fighter with so much spunk.  I quickly had to learn to be her caretaker. I learned how to flush her line every day, how to change her dressing three times per week, how to administer her oral meds, how to run IV antibiotics through her line, and I learned all there is to know about ALL and the meds and side effects and risks.  I felt like I had to become a hematologist and oncologist.  Kya's first 8 weeks were a phase called Induction that involves very heavy chemo rounds. The phase is very intense and rigorous chemo to wipe the body out very quickly and harshly. And for Kya the protocol 8 weeks turned into 10 weeks because she got so very sick. We spent almost the entire 10 weeks inpatient, except for 4 nights. She received spinal taps with chemo under anesthesia twice a week and received IV chemos.  She was also receiving blood transfusions very regularly to replace all her lost blood. She got very sick and lost so much weight that she dropped down to just less than 5 lbs.  The rigorous chemotherapy caused the immune system to be completely wiped out to 0 white blood cells and neutraphils. Kya also caught rotavirus, a stomach virus that causes extreme diarrhea, and had too compromised of an immune system to fight it.  Kya was on so many pain meds and antibiotics and steroids right from the beginning. The chemos and meds ravaged her body and it was so hard to watch.  But Kya got through it with the most amazing smiles any baby has ever displayed. She always demonstrated such grace and beauty. Many times I just held her while she cried and just looked up at me with her beautiful big eyes that said "mommy help me".  And when Pavan came up every weekend he held her and comforted her as well.  We also always tried to keep Jas close by her side so she would feel her love and support too.  There is that twin connection that we truly believe in and it helped Kya. With Kya not able to tell us what was bothering her it was even harder. From the beginning Dr Gruber was absolutely amazing and our nursing staff was tremendous.  They were all so loving and really helped keep our family together and helped us with the girls and made us feel warm and loved.  Dr. Gruber shed tears at the hard news but then told us she would stop at nothing to help heal our baby girl.  Kya's body responded to the chemo immediately and was doing exactly what we would want it to do.  Day 15 of the protocol is a BIG one; it is the first Bone Marrow aspirate (BMA) that we checked the MRD, minimum residual disease, which would tell us if she was in remission. Kya had her BMA and to everyone's joy and a bit of surprise, she had 0 leukemia cells! 0%!!  It was amazing news for us and the entire leukemia team at St Jude's.  This does not usually happen with infants. We knew our miracle baby was fighting with all her might and although her body was small, she had so much fight in her.  She told leukemia and chemo that she was bigger and better and stronger than it! What an inspiration. She always had a way of raising an arm in the air and posing like Mighty Mouse, so we had coined her our Mighty Mouse from her early days after birth.  Now she was really living up to her name.  We were so happy that we were doing everything we could for her and we would all stop at nothing. Then in early May about a week after Kya had received her most grueling and strongest chemos that were a course of IV chemos every day for 5 days and one very strong one that is given to infants only, I saw her start to have seizures.  They started off infrequently and we closely monitored to determine if they were seizures but then they became full blown seizures.  We were moved to ICU and one night Kya had a 4 hour seizure.  It was like the world ended.  Our poor baby was then put on regular seizure meds and spent a few days in a sedated state. She slowly adjusted to the meds and became herself again. Thankfully the MRI did not show any brain damage or issues. But because chemo can cause seizures, especially high dose chemos and one that she was due to get in the second phase was a new high dose, we were given the news that we would not be able to go home and back during any of the phases of Kya's chemo.  We would have to permanently live in Memphis at Target House so that Kya was close by at all times. We would do anything for our baby girl and so we accepted the news and made the best of it.  We reviewed the time line and hoped it would work out to be Home Home by End of December. We were also happy to have Kya back and to know her seizures were a result of the chemo and her multiple MRI's did not show any major damage.   Pavan and I adjusted to the fact that it would be longer that he would have to fly back and forth every weekend and that I would be by myself in Memphis for the most part.  I had family and friends come to help as much as possible which was tremendous. Kya started the second phase called Consolidation which would be spinal taps and a high dose IV chemo every 14 days.  Because of the likelihood of seizures, we had to be inpatient for the duration of 12 days each time. This phase started out with another BMA and check at her remission status.  We were again elated to get the results that Kya remained MRD negative!  She was beating her leukemia! This phase lasted for 2 months and Kya actually did not have as hard of a time with it and did not have any seizures. We even got to have a few passes to leave the hospital for a few hours and attend some of the fun events at St Jude. And the big prize at the end of the 8 weeks of Consolidation phase was that we would get to go home to FL at the end of July for 6 days for the first time since March! We did get to and Kya had just barely enough of an immune system to travel but we enjoyed a nice time at home and visited with family and friends and the girls actually got to see the house.  It was also a break before we were to start up weekly IV chemos beginning July 30 for about 5 months and two very heavy rounds of chemos called Reinduction I and Reinduction II the end of September and hopefully December. July and August were Kya's best months.  Although she was getting weekly chemos, she handled them well and could be a "normal" baby and enjoyed lots of fun times at the hospital or Target House.  We loved having the weekends with Pavan too and she and Jas were so fun together. We enjoyed making friends with other families and spending time together. Kya was also finally able to put on some weight and get to 9.75 lbs. She was breast feeding great and that made me so happy and proud.  She was always a happy and loving baby.  She was so sweet and just full of life and love.  People always asked what we did to make her smile and we didn't have to do anything!  She was just happy and loved to shine her beautiful smile at everyone.  She cheered up many other patients who were so much older than her because she was so brave and strong and smiled so much. Kya had her heavy Reinduction I week of chemo September 10 that began with a spinal tap and another check at her bone marrow. Again the BMA results came back and she was negative for leukemia cells!  Absolutely amazing, 0% leukemia cells!  Kya was winning! The week of chemo and heavy steroids was brutal on our poor Kya though. She cried almost continuously for a couple days and just did not feel good.  I spent most of the time just singing to her and holding her.  She received many pain meds to try to help her through it but those steroids were very hard on her, combined with the chemo. Kya thankfully loved music and it was calming to her.  She often loved to hear the songs that I had been singing with her from our prenatal yoga days. We had long and hard days but I am so glad I got to provide her with so much comfort and of course her breastfeeding nutrition.  After this heavy round of chemo Kya's immune system remained at 0 white blood cells for 28 days.  I was extremely careful with her and she only left the Target House apartment for her daily appointments.  When I took her to the hospital for appointments she was completely covered at all times.  Kya was not happy about this because she loved showing her beautiful eyes and smile, but she was too small for the masks and needed complete protection. Then the second week in October Kya started having fevers.  This is always scary because with no immune system she was so susceptible to everything.  We ended up being admitted Monday night October 11 and the nurse and doctors ran cultures to look for any bacterial infections or viruses.  Nothing came up.  But Kya kept having fevers so we ended up having her get a ct scan of her lungs and abdomen.  Unfortunately we got the bad news that Kya had caught aspergillus fungus in her lungs.  UGH.  Our poor baby never got through a heavy round of chemo without catching something, even with being as careful and protective of her as we were. Thankfully Kya was put on an anti fungal medicine that controls aspergillus very well and she would remain on that med until the 3 years of treatments was over.    Throughout the months of chemo and steroids, Kya endured so much. The antibiotics and chemos and steroids wreak havoc on the body as it kills off the bad cancer cells and as a result Kya had kidney issues, liver issues, hypercalcemia, and osteopenia. None of it was every life threatening and we were always told it would clear itself once her therapy was over. The steroids Kya was on were always very hard on her.  They made her ravenously hungry so all she wanted to do was breast feed and they made her sleepless and irritable.  The poor girl just could not get a break. A shining light through it all was that our doctor and the team of doctors at St. Jude were always amazing.  If Kya needed 20 ct scans, then Kya got them all. If Kya needed an MRI, she got it.  If she needed extra medical supplies or fluids she received them.  St Jude takes care of the patient and family so well.  Kya also never followed her protocol path.  She liked to pave her own way and teach the doctors. If her counts were supposed to recover on day X, she would recover sooner or later. If her body was supposed to do one thing, she did another.  She was teaching them that all infants are not the same.  And our doctor and all of St Jude is very good about accepting this and letting the children's bodies say what they need and when.  They do not use a cookie cutter approach to treatment.  There are standards that they follow but if Kya needed something extra or had to skip something at a set point, then she did. Kya always showed us how she loved life and she lived to love.  She smiled and cooed and was so spunky.  She had a radiant smile that stopped people in their tracks.  Many times she encouraged new patients who were older than her to be strong and her smile helped them be brave. We tried to spend as much time as a family of 4 as we could. Pavan flew to Memphis on the weekends and sometimes got to work from Target House for a week or two at a time.  Those were the best weeks and days.  A few times we did get to sneak out as a family when Kya had counts and go do "real" activities, such as see a Redbirds baseball game or go to the swings or a restaurant. But for the most part we just enjoyed being together in our 400 sq ft Target House apartment or on the Target House property.  Kya could have fun in a small little space and did not even really like toys.  She always just wanted to smile and talk with her eyes. We made many friends with other patient families and grew such close bonds with them and realized we had so much more in common than just cancer. Many of the other patients just adored Kya and Jasmin and got to play with them when everyone was healthy enough. We all looked out for each other, but I have to say we were on the receiving end much more since I could only help so much since I had two babies to care for.  We made beautiful relationships. It was always so hard to say good bye when a family would finish up treatments!  As much as we were happy for them, we were sad at the same time. We built bonds that are forever tight. We made friends with Nancy Mills, the founder of the organization Ali's Way, an organization to honor her daughter Ali after she passed away. They host breakfast at Ronald McDonald House and we had a breakfast there in early September just when Kya was getting her heavy chemos.  After meeting Nancy she realized I needed help and talked to a friend who talked to a friend who talked to a friend and we ended up with a team of our Memphis "angels" who helped me at our appointments during the week and brought us meals, supplies, and played with the girls. They were such a blessing. Kya handled her chemo and steroids and antibiotics as best she could and we got through the holidays Thanksgiving and Christmas at Target House.  We spent time with other families and had some visits from family members for long weekends during the fall and friends came up in early December for the St Jude marathon weekend and our family members came for Christmas.  Kya was gearing up for her last heavy IV chemo round that was supposed to be at the end of December.  It was Reinduction II and she was set to go in on December 27.  She did start the chemo but it was stopped after 2 of the 6 doses because her body responded so strangely to it and she dropped her counts significantly.  We were discharged after 3 days and we waited for Kya's body to rebound so that she could receive the chemo.  We were anxious to get it started because once she finished this round and recovered, which was estimated to take 4-6 weeks, we would get to go home to FL and finish her 120 weeks (~2.7 years) of chemo in Florida. But as mentioned earlier, Kya always had her own plan and her body was running the show! So we waited it out. We ended up being admitted on January 10 because Kya desperately needed fluids.  Her electrolyte levels had gotten very affected by chemos and meds.  Once they were regulated, Kya was finally able to begin her last high dose IV chemo on Wednesday, January 12. It lasted 3 days and then we were discharged and had daily appointments at the hospital for blood and platelet transfusions since Kya's body always got very affected and had a hard time making platelets. Kya's immune system was at 0 so we had to be very protective of her. A little over a week later on Saturday January 22, we went in for Kya's usual blood count check up and we went to the medicine room so that she could receive blood and platelets. Halfway through our visit there the doctor came in dressed in isolation apparel and delivered us bad news.  Kya's nasal swab culture from the day before came back positive for RSV, a severe respiratory virus especially severe for infants and especially for Kya with a compromised immune system.  We were taken to the leukemia floor and admitted that night.  The doctors wanted to treat Kya with an inhalant medicine that can sometimes help babies who catch RSV. The down side is that she had to be put into a bubble around her crib and receive this medicine for 14 hours overnight and no one could be in the room with her!  We had to let our poor baby girl who always wanted to be held and cuddled be all by herself to receive this medicine.  And Jasmin could not be anywhere near the medicine. It was heart wrenching.  We felt so torn apart.  Our family that tried so hard to be together, had to be separated. When Kya received the medicine I slept at the hospital in the parent room and anxiously waited for the 14th hour. Kya received 15 nights of this medicine. Nights 13-15 Kya did not have to get it for 14 hours she got it 3 times a day for 2 hours.  This was a bit more bearable, although she still cried and hated being away from us. During this time Kya had good days and bad. She only needed oxygen as a "blow by" on occasion but she was breathing so fast and her lungs were working so hard.  She had a cough but the scariest was her rapid breathing.  The doctors just did not know how long she could go on breathing like that so fast. On Saturday February 12, day twenty-two inpatient with RSV, Kya was breathing so fast and really struggling so we were moved to ICU for closer monitoring. Until this point we always held Kya and spent as much time with her as we could.  We even got Kya and Jasmin to see each other through the window and door to her room. On Monday February 14, Kya's oxygen saturation that should be at 100% dropped into the 60-70s and she struggled to bring them back up.  She was minutes from being put on a ventilator but turned around and brought up her sats.  Thank God!  I was just given the info that when a person is put on a vent they must be paralyzed and sedated so I was so scared for Kya and wanted to be with her every minute! That was a very scary time. After this scare the Intensivist Dr would not allow me to hold Kya. She wanted to keep her propped upright in her bed to allow her lungs full expansion. I begged and pleaded that I could do that while holding her, but was told NO.  So I stood by her bedside every waking moment and talked to her and played with her and we talked to all the people who came in the room.  I sang and danced around her crib.  She still smiled and laughed through it all.  Wednesday February 16 Kya spiked an extremely high fever. The doctors ran more cultures and assumed she probably had a bacterial infection on top of the RSV that was still positive in her body.  Her x-rays continued to show no improvement despite the medicine and time.  Finally the Intensivist gave into me and let me hold Kya!  Oh I did not put her down for hours!!  I sang to her and rocked her and it was so very magical. Finally I had to let her lay down because she got very hot and we needed her in her bed. She kept having fevers all night long and continued having breathing issues. Thursday morning February 17, Kya had to be intubated and put on the ventilator breathing machine. She just could not keep breathing on her own any longer.  It was such a hard day knowing that Kya would now be paralyzed and sedated and we would no longer get to interact.  Also Kya was still extremely sick from RSV and the vent is a life saving machine. For the first time ever, we were very scared for our baby girl's life.  Saturday morning February 19, the Intensivist sat us down and explained that Kya was on such high settings on the vent and there was a likelihood that she would need to be moved to an oscillator breathing machine. It works in a different way but allowed Kya to receive the high pressure for her lungs that she needed. Overnight Saturday night Kya was dropping her sats on the vent so she had to be moved to the oscillator.  She remained on this for a week and was making progress so they moved her back to a vent. She stayed on the vent for 9 days but during those 9 days she got sicker and needed higher pressures again.  On March 8, Kya had to be moved back to the oscillator for high pressures again. Of course, all of the high pressure and high oxygen was damaging her lungs and Kya also had damage from the RSV. The poor baby was trying to do so much and her body was fighting but with no immune system and a very sick set of lungs, it was just so hard. The RSV took over. After 8 weeks of fighting, the amount of RSV still in Kya's body was as if she had just contracted the virus. It was sickening. The team of doctors at St Jude decided that since Kya was done with her last heavy round of chemo, we would be better off to be transferred to Le Bonheur Children's hospital, a 5 minute and 3 miles drive from St Jude.  They have more intensivists who have dealt with RSV cases. The transport team came on Wednesday March 9 to transfer Kya. This was so scary and not easy. She was on so many medicines and pumps with her sedatives and paralytics and of course the most important, her oscillator breathing machine.  After two hours they got her in the isolette to transfer her and we went to the ambulance.  My heart was racing the entire time.  Kya had to keep her oxygen saturations high enough in the short, yet long drive and then get moved to her new ICU room and get situated there.  The night of transfer Kya really struggled to keep her oxygen.  We were told by the Intensivist team there that she was just so fragile and her likelihood of survival with such sick lungs was very low.  The next days and week were so scary.  New nurses and doctors had to learn about Kya and we felt like we constantly had to keep them apprised of her condition and status. They did not know Kya like St Jude did. It was hard. Kya's condition was also not improving at all and was turning for the worse. It was so painful to see our baby struggling and suffering so very much.  Each moment was critical. But I continued to talk to Kya, play music, sing, and hold her hands and touch her.  It was the only thing we could do really. Pavan had flown in to work from Target House so that he was close by at all times.  Then Monday March 14 we had one of the biggest scares.  Overnight, Kya started to drop her oxygen saturations into the 50s. We waited impatiently while the Intensivist came and after an hour it was determined that Kya had burst a hole in her lungs (pneumothorax) and needed a tube immediately to plug it. This was one of the greatest risks she had because of being on such high pressures on the oscillator. She made it through the procedure and her oxygen started to come back up. But we knew this was not a good sign. All week long was just like walking on egg shells. By Friday night Kya started to really struggle to keep her oxygen saturation high.  She dropped into the 60-70s and just could not get them any higher. Late Friday night the team sat down with Pavan and I.  They told us there was nothing more they could medicinally do for Kya.  We could not go any higher on the pressure, and the oxygen setting on the machine was already at 100%.  There was one other complicated and risky procedure they could try but since Kya was so sick and had been on a breathing machine for 4 weeks she was not a candidate and the mortality rate was 100%.  Pavan and I had to make a hard realization.  We sat and cried so hard.  We knew we were losing our baby girl; it was just a matter of time.   We knew Kya was going to die. Pavan and I snuggled up with each other in Kya's room and stayed up until 4am or so.  Saturday morning March 19 Kya just could not hold on any longer.  The team tried last ditch life saving efforts but they were futile and would have to be repeated continuously.  We asked that Kya be taken off the oscillator, since we could not hold her on that, and be put on a breathing bag or vent.  This way we could hold her and she could be on our laps. Pavan and I sat in a chair together and Kya lay across our laps. On March 19 at 10:20 am, our sweet angel Kya took her last breath and heart beat while being held and loved and kissed by Mommy and Daddy.