THE HELD FAMILY
This is the Journey of Lillian (and the entire Held family) as told by her mom, Tina.
Since May 2014 the Held Family has been standing strong with Lillian, the 5th of Brian and Tina’s 6 children as she battled AEL – a rare subform of leukemia typically diagnosed in adults and so seldomly seen in children that only a handful have ever been treated for it.
This story began in Italy where Brian was assigned to work at the time. Lillian was so ill she was medivac’d less than 24 hours after a fever prompted a visit to the ER at the small US Naval base. The trip went from there, through Germany and on to Washington DC to Children’s National Medical Center where she was diagnosed and began treatment. Shortly after her arrival at CNMC she had such trouble breathing she was transferred to the PICU where she was intubated and kept deeply sedated; we call that her hibernation and she lost most of her muscle use to atrophy during those 7 weeks. Eventually she received a tracheostomy, a broviac line, a feeding tube and catheterization to keep her alive. It seemed, during that time that she was taking about twice weekly trips down to the OR to include one emergent trip to correct an earlier medical device placement that was not working and in fact was endangering her already fragile life.
Talking to the many people who cared for Lillian those first weeks most of them would tell me they didn’t expect her to live through; the transport back to the US, the first night in the PICU, any of it. Quite a sobering thing to hear. Lillian quickly became known throughout CNMC as the little girl whose favorite color is purple and loves Batman.
During the first four weeks at CNMC four members of our family were still in Italy finishing out the school year, packing up our belongings and preparing for our household goods to be moved back stateside. It was grueling on them. Lillian’s twin sister cried daily and couldn’t sleep alone. They flew in for a quick two week visit with me and Lillian while Brian and I made the hard decisions that were necessary for Lillian’s recovery. Upon their return to Italy to finalize our move they arrived home to a flooded basement. More than half our belongings were destroyed by water or mold and our maintenance man had been stealing from us. But, it was just stuff. The bigger kids also had to say a very quick goodbye to good friends and daily routines they were comfortable with. That first year back they lived intermittently with some good friends during the week for school, with us at the Ronald McDonald House during the weekend while I lived primarily at the hospital with Lillian. Eventually we all lived together in several hotels while we shopped for a new home. In two years’ time they attended three different schools. We dubbed ourselves The Nomads.
Our oldest daughter was at school just down the street from the hospital and a week away from finishing college the day Lillian and I flew in. She dropped everything and met Lillian and I at CNMC ER within thirty minutes of our arrival. After that last week of school she spent every day of Lillian’s hospitalization sitting with me at Lillian’s bedside. After graduation she willingly put off doing the things a new college graduate should have been doing: job hunting, car shopping, spreading her wings, having fun with friends. For a year after graduation she spent her time instead helping us get resettled, organize logistics for her brother and sisters’ needs, helping me keep up with Lillian’s medical care and babysitting her youngest sister.
Blessed remission took hold after the first of five cycles of chemotherapy and her lungs began to slowly recover. As her lungs got stronger so did her body. At 5 weeks into treatment she was able to begin physical therapy. It was not easy and she cried a lot. It was painful just to raise her head off the pillow at first. Being the strong, brave, determined kid she is, she struggled through and by the time she was well enough to be transferred back to the Oncology floor she could sit in a chair unassisted for about 30 minutes. Her favorite thing to look forward to each week in the hospital was hospital bingo – the very first game she played was from that chair and she won! A milestone to remember!
Between May and Halloween of that year Lillian was healthy enough to be released from the hospital only once, for a one week respite. The day we left the hospital was the day I realized Lillian was still a long way off from being healthy. As I returned from the pharmacy with 3 large bags of medicines it hit me what a very long battle we still had to help her through. Part of me was disappointed. She had made such great strides in such a short amount of time relatively speaking considering where she started from that I anticipated leaving the hospital with a “medically normal, healthy” kid. But the truth was she wasn’t. We spent hours speaking to case managers, home health care nurses, ordering medical equipment and arranging for delivery of that equipment in preparation for a short one week trip home. The kid I had seen just a week before “The Fever” spontaneously challenge and beat her twin sister to a running race around the high school gym was now in a wheelchair and needed a daily nebulizer treatment and oxygen at night while she slept. It was mind numbing, frustrating and sad. But, once again she defied our expected limitations and within that week she was walking up and down stairs unassisted, eating close to full meals and thriving.
By Thanksgiving she had finished her 5th and final round of chemo and was stable enough to be discharged. What a holiday of thankfulness we had. Despite the hardships Lillian had overcome the odds the doctors had initially thought she had of survival. And while we were still counting our blessings it was a knock to the stomach when she had a setback and ended up in the hospital because of vomiting and dehydration. It would be the first of so many unexpected overnight stays. They seem to happen at least monthly still.
In April 2015, almost a year after that visit to the military base ER and 3 months of house hunting we moved into our new home. We spent the whole summer moving in, getting settled and attempting to unpack in between clinic visits. Brian was able to buy a used car and we returned the car we had been borrowing for over a year from good friends. Shortly after that our 2003 van, named “Betsy Soup” finally arrived from Italy. Our life was beginning to look put together and ‘correct’ again. It was relaxing to watch our oldest daughter begin her adult life by job hunting and going out with friends. It was exciting to be enrolling Lillian and her twin sister back into school. They could finally finish first grade together, although a year late. Unfortunately the joy was interrupted by lab results which indicated the leukemia had returned. She had relapsed. It was devastating.
Lillian attended the first day of second grade meeting her teacher, learning the classroom rules and making new friends. Then she came home to pack a suitcase and head to CNMC to begin cycle one of three chemotherapy cycles in preparation toward a bone marrow transplant. It was challenging to know what was coming, how miserable she’d feel and what she’d go through without feeling defeated at the onset. But this time she had early detection on her side. She was still relatively healthy in comparison to the first go round and physically stronger too. She spent her days roller skating, bike riding, swimming, even being included in family chores before the relapse. We had confidence in her ability to beat this evil disease a second time and our ability to pull together to support her and each other.
Early on in the process of the first go round all our children were blood tested for their match to Lillian as her possible bone marrow donor. One of her big sisters was a perfect match. We had been elated and once again in our simple life our faith in the blessing of our large family had been reinforced. She didn’t qualify for a bone marrow transplant the first time around because her lungs were too sick. By this time, thankfully she was stronger and healthier. The doctors determined she was strong enough to overcome the side effects of the intense chemotherapy and had a better chance of surviving the transplant process altogether without trauma to her already injured lungs.
August, September and October 2015 were a blur of dozens more surgeries, invasive procedures and medical treatments. One poignant moment happened at the beginning of this second battle. It was her first night back in the hospital, all our family was headed home, the activity of registration and getting settled was at a lul. Lillian looked at me pointedly and innocently asked, “What would happen if I didn’t get the medicine to make me well?” I answered her honestly and plainly while trying hard not to tear up, “You would get more sick, very sick and probably die.” She got a big grin on her face and exclaimed excitedly, “Well no one wants that!” Her determination to fight was engaged.
At one point shortly after the end of chemo cycle one, the day we were packing up to go home in between cycles, Lillian had a reaction to a drug which caused a severe rash which itched so badly she couldn’t sit or lie still. At it’s peak it was as if she was a burn victim. It hurt to touch her and she was a mass of blisters. Relief from the pain and itch was only found from high doses of narcotics. She endured 2 excrutiating skin biopsies in an attempt to isolate the irritant and begin treating her. It took months to heal from that. And delayed her discharge which meant less time at home between chemo cycles.
Toward the end of the pre-transplant chemotherapy, after hours of research and thought we made the decision to transfer Lillian’s care to Children’s Hospital of Philadelphia. Their in-hospital policies matched more closely with how we were hoping to harness the healing power of family pared with Lillian’s medical treatment plan. It would be a huge challenge logistically. Her transplant was scheduled for December 30th. She needed to be admitted to CHOP on December 18th. We had to arrange for our daughter’s lab tests and logistics for her donation to Lillian. Christmas was coming. Kids were in school. And the transmission on the van went bad. Thankfully we were given a good price on the installation of a rebuilt transmission through a recommendation. Shortly after we made the first long distance trip to CHOP it too went bad. We were blessed again with a mechanic who could fix the problems and give us a substantial discount although it still didn’t seem to work 100% correctly when we got it back the second time.
We spent Christmas through New Year’s Eve as a family during the days visiting in Lillian’s hospital room. She was feeling well enough to play and celebrate with us. In fact, she acted like a healthy kid does on Christmas Eve in anticipation of Santa’s visit. And he did make a visit. Our family stayed at Nick’s House. A local apartment run by a foundation whose purpose is to support families who are supporting someone battling cancer.
By New Year’s Day 2016 the effects of the chemo and pre-transplant drugs were beginning to have the anticipated strong and miserable side effects. Over the course of 3 consecutive months in-patient Lillian would miraculously stay out of the PICU, not having any lung/breathing issues but suffer days on end of fevers in the 104 degree range along with vomiting, intermittent rashes, and diarrhea. Eventually we had reason to smile, blood work confirmed that her sister’s cells were beginning to graft! Not long after that they were 100% grafted! The healing and strengthening process could begin. But as is Lillian’s case, it wasn’t to be an easy process. She was plagued by GVHD of the skin and gut and stomach pain. After weeks of tests the good doctors determined she had a blocked central bile duct which required surgical placement of a shunt to widen the duct. Which worked well and the pain and fevers began to subside.
Shortly before her discharge in February 2016 a surgical test was done and determined she was finally, Finally CANCER FREE!
Lillian’s GI troubles were just beginning however. She’s had 3 more in-patient surgical procedures to correct the bile duct. The last was a one month long stay in which she had her gallbladder removed. She is doing fine without it and doesn’t miss it in the least. Unfortunately during that same stay she was diagnosed with GVHD of the liver. That is one of the hardest and most dreaded GVHD issues to treat. She was sickly jaundiced and in pain. As complicated as Lillian’s medical battles are, she has double the strength and determination to survive and heal. She’s proven that three or four times already. After the very first dose of a six course IV medicine she was already showing remarkable improvements. Her doctor said her liver was improving faster and better than she ever anticipated for anyone. We were thrilled! All of those GI issues took their toll on her weight though. She was sent home with an NG tube for liquid nutrition replacement to be given at night. We’ve seen slow but definite weight gain so we are hopeful this will be a suitable option but not last too long. Nutrition is key to healing. Discharge day was July 28 but she will have weekly clinic appointments at CHOP to check her weight and labs until they show significant improved safe levels.
Lillian’s medical worries were tempered with the joy of receiving word that our second daughter was accepted to the college of her choice and watching her graduate from high school #17 in her class despite all the changes, stress and uncertainty during the past two and a half years. Last week we loaded ourselves and her stuff into two vehicles and took the five hour drive to deliver her to college. The day had a celebratory and determined feel to it. On our way home however, that feeling came to a screeching halt. Literally. Thirty minutes from home at 1am a deer was crossing the highway and of course as these things go, we didn’t see it until the last possible second. While we jammed on the brakes the deer continued it’s saunter across the road until it suddenly stopped, turned toward us and jumped back into our path resulting in hard contact with the front of the Betsy Soup. There was nowhere to go to avoid it. The minivan is totaled. Being a 2003 model it’s definitely worth more in the junkyard than it is to fix. I’m glad we don’t consider people’s health and well being in the same manner.
Today, here we are, less than one month after Lillian’s last discharge with a rental car, but in need of a permanent vehicle to replace Betsy Soup. As seems typical no sooner are we beginning to get back into some sort of “normal” routine after the last hospitalization then we are taking Lillian to an ER visit always resulting in an overnight stay for monitoring and labs. She had begun vomiting and was dehydrated on Saturday morning. The good news is she bounced back very quickly and was discharged in less than twenty four hours of arriving at the ER. And, the best part for her…the ambulance used lights and sirens. Out of many emergency vehicle transports she’s needed we never had lights and sirens before. It was exciting to tell her, “Look Lillian, all those cars are moving over just for you!”
To continue to following Lillian’s Journey, you can follow her facebook page: www.facebook.com/TeamLillianGo