Levine Children’s Hospital now has a specialized treatment suite for an aggressive form of childhood cancer, thanks to a $1 million donation from the Isabella Santos Foundation.
Originally published on Atrium Health’s Daily Dose
Opening one of the country’s few lead-lined rooms to treat rare cancers, Levine Children’s Hospital will soon change the landscape for local cancer care. And Charlotte can thank one little girl who inspired a community to build hope for kids like her.
Toward the end of her fight against cancer, 7-year-old Isabella Santos received a special therapy called MIBG that added 10 more months to her life, including another Christmas and another birthday spent with her family.
Back in 2011, Isabella had to leave her hometown of Charlotte for her MIBG treatment, which can only be delivered in a lead-lined hospital room that keeps the therapy’s radioactivity in check. But today, thanks to the foundation created in Isabella’s honor, children from Charlotte with rare types of cancer can stay close to home to get this cutting-edge treatment.
Levine Children’s Hospital, backed by a $1 million grant from the Isabella Santos Foundation (ISF), will soon open its own MIBG therapy suite – and become one of a handful of children’s hospitals in the country to have one.
This room “is really going to change the landscape” of local cancer care, says Javier Oesterheld, MD, medical director of the cancer program at Levine Children’s. An MIBG room can not only treat children with neuroblastoma – the type of cancer Isabella had – but also be used in advanced clinical trials to test new products on different types of cancers.
“We’ll really be ready for the next wave of clinical medicine,” says Dr. Oesterheld, who also treated Isabella.
A room like no other
LCH’s room has been designed to offer the best patient experience possible. The room is actually a suite – with a separate space where a child’s family can stay overnight.
During Isabella’s MIBG treatment at the out-of-state hospital, her mother Erin stayed in the same room with her and was exposed to a large amount of radiation.
“I felt extremely exposed at the time during the treatment,” says Erin, who is the co-founder and president of ISF. “Of course, I was willing to do that for my daughter, but I feel like keeping the parents safe should be as important as keeping the patient safe.”
The room at LCH will be one of the safest in the nation. More than 20,000 pounds of lead will separate the patient’s room from other parts of the suite.
Despite this physical barrier, the room will have several features that keep patients and their families connected. A lead-lined window will allow them to see each other directly. And an advanced audio-visual system will allow nurses and family members to monitor patients at all times – and even have a little fun.
“We’ve been able to let the parent and the patient play video games together from separate rooms. We have a great audio system where they can constantly hear each other,” says Dawn Bartock, CPNP, MIBG therapy clinical lead and pediatric nurse practitioner.
Erin Santos also wanted the room to reflect Isabella. Her artwork graces the walls, and the ceiling features twinkling lights and a shooting star.
“Every time I visit the suite, I can feel Isabella’s presence,” says Erin.
Community support changes everything
Although ISF has supported individual clinical trials and paid for LCH staff in the past, the MIBG room represents the foundation’s most significant contribution to date.
The room has been on Dr. Oesterheld’s “wish list” for a long time, because he knew how much it could improve care for his patients. And he’s certain it couldn’t have happened without ISF’s tireless fundraising in Charlotte.
“I think it’s monumental that our community has come together to make us the top pediatric cancer program we are,” says Dr. Oesterheld.
And more help is on the way. Earlier this year, the ISF pledged $5 million to create the Isabella Santos Foundation Rare and Solid Tumor Program, which will expand the hospital’s pediatric clinical trials and recruit a national expert on pediatric solid tumors as its endowed chair.
But the room is a tangible – and emotional – first step to improve the lives of so many patients.
“To think that Isabella will almost be gone longer than she was alive… what an incredible impact her seven years of life has provided for other families. I’m extremely honored that this is being built. I’m so proud of it,” says Erin.
CHARLOTTE, NC (WBTV) – A special lead-lined room is opening Wednesday at Levine Children’s Hospital in Charlotte to treat rare cancers. Isabella Santos, 7, and her never-ending fight against cancer inspired and funded the room.
Santos died of neuroblastoma in 2012. She was diagnosed at two years old. Santos’ family and community supporters raised $1 million to create the special room that will help kids with specific cancers get treatment in Charlotte.
In 2011 Isabella’s cancer returned. Cancer on her brain. Her bones. Bone marrow. Neuroblastoma showing on her chest and abdomen. Below are her mom’s personal journal entries detailing the moment Erin Santos learned that Isabella’s cancer was back. These journal entries spanning across close to 10 months describing Isabella’s parents’ emotional decision to start MIBG therapy at Children’s Hospital in Philadelphia, the memories and much needed time received, the pain and heartache, and the last moments of Isabella’s life.
To a cancer family, time can be the biggest gift of all. MIBG therapy gave Isabella 10 more months. 10 more months of memories with her family. Although MIBG gave Isabella more time, research is studying MIBG in upfront cancer therapy and not just extending a child’s quality of life. Levine Children’s Hospital now has one of the country’s few MIBG Therapy Suites that will not only treat children with neuroblastoma but also be used in advanced clinical trials to test new products on different types of cancer.
The journal entries below are raw and real, a cancer mom’s personal journey of the last 10 months of her daughter’s life. Written by Erin Santos. Journal entries are from Sept 20, 2011- July 5, 2012.
[9/20/11] September 20, 2011
I feel like as many times as I have had to write this journal entry, it should get easier to write. But in fact, it doesn’t. I think it’s almost harder after all Isabella has been through. All the odd symptoms were adding up to something and today the news exploded. Rachel and I could tell we were being avoided so the nerves were mounting. As soon as we were called back to Ursula’s room and I saw Dr. Kramer, I just knew. Rachel took ib to the playroom for distraction. They started asking me questions, how was she doing, had she felt dizzy today, etc.. I finally had to stop them and say, “wait”. What is on the scans??!?! Call Stuart on the phone immediately More areas are showing up in her head, her bones, bone marrow, areas in her chest and abdomen were cloudy but they are assuming it too is more disease. The neuroblastoma is spreading and it’s spreading quickly. Dr. Kramer felt that the surgeon would no longer operate and that high dose was not an option either. She knew we didn’t want us to have Isabella spend the rest of her life in the hospital. The new disease on her head is bleeding into her brain and they have fears of swelling and seizures. Because the disease is widespread, we can’t treat the head with 3f8 or 8h9 into her port because of the rest if her body would not be covered in the treatment and that disease is spreading quickly. If we focus on her body, the head disease will take over. I told them a year ago that when it was time to quit, I needed them to tell me. I looked at these incredible women and their mouths just couldn’t get those words out. Their eyes were full of tears. Dr. Kramer told me that very rarely does she see parents who have done everything right. Normally they are cleaning up bad decisions and they are too late. But she felt like we have made every right decision when it comes to Isabella and we will do what is best for her. She suggested doing spot radiation on the site that is bleeding immediately. This will give her immediate relief. Steroids and anti-seizure meds will also help. See if we can do an outpatient drug like millennium asap to prevent it from blowing up. After 1 round, scan and see where we are. That will take is to Halloween. Did you just hear that? Halloween. We will go trick or treating and then decide if we will be letting her go. I can’t even get my head around that. She said to go home, be with your family, do things with her that make her happy. Call in home health and get the process started just in case. Because it might be gradual, but Isabella will want to do less and less and then you will know it’s time. Stuart and I have a lot to discuss. I can barely stand and in 4 days we are celebrating Isabella, her journey and hopeful cures. My mind races to Grant an Sophia and my heart aches for them. Never-mind the huge rock that sits on Stuart and I of what we do at this crossroad and how we will have to live with it for the rest of our lives.
As always, Isabella cuddles, talks about her kitty, plans for her next birthday party…. I ask her if she would like to go anywhere on a trip her answer.. Maybe California because I would like the weather there, or to dinner with you and daddy. Or Disney world! All such innocent answers. She wants to go back to Calvary where she feels safe and loved. Where she sees her old teachers, her brother and has no stress of making new friends. She has friends she tells me.. Soliel, Julia, miss Chrissy, and then lists all my girlfriends. She is just so excited about everyone coming in this weekend. She only sees the week ahead. Which is sometimes what I love about her.
I am so scared.
[9/21/11] September 21, 2011
When we got in late last night, Isabella stayed up telling Daddy of all her NYC adventures. I on the other hand, checked Sophia, crawled in bed with Grant for a few minutes and then passed out on my bed with my clothes still on. When I woke this morning to Grant crawling in to cuddle, I forgot for a moment what was in store for us today. That moment was nice. I immediately popped up and turned on the radio. I was supposed to be on 106.5 the End this morning to promote Isabella’s race but passed it off to Charlotte. Ugh.. I slept right through it. But I was able to listen later in the day.. she did a great job. We headed downstairs slowly and started our morning ritual. Our doorbell rang and I thought.. crap! My friend was coming to get Sophia for the day! I went to the door and saw my Mom and Bob peering through the glass. I just started bawling.. Mom said, “LET US IN!!”. Best surprise ever. They took Grant to school so Stuart and I could figure out what we are doing. Some of our largest life decision take place in our bathroom while we get ready.. this was no different. We loaded Isabella up in the car and headed into Levines. We were met by Dr. Kaplan. As Isabella played we discussed our options. First.. the spot on her brain needs taken care of immediately. The radiologist here.. (who I love for his urgency and care) will be performing a radiation surgery that will be intense radiation directly to the tumor on Monday at 9:30. In the meantime, we will need an MRI and a mask fitting that will take place under anesthesia tomorrow. This radiation is supposed to be extremely effective and he is very confident it is our best option. In the meantime, we will start Isabella on a 5-day outpatient chemo regiment that will give both systemic (full body) and CNS (brain) treatment. The chemo will start today and continue through Sunday. We will scan her after she recovers (approx. 21-25 days) and see what is going on. If the disease has decreased or has become stable, we will then discuss other options.. There are many trials that we could possibly go on, other therapies offered at places like CHOP, etc.. If the disease is still progressing, it may be time to make her comfortable. Hard to think that in 4 weeks, we will have a large crossroad in front of us. She has traditionally responded well to chemo and we hope that it is still the case. But Stuart and I also had a long talk about the quality of life so that will be evaluated each step of the way. The steroids that she started last night are bringing back appetite and mood swings. The port placement this morning was like no other. I couldn’t believe what I was witnessing. I had to hold her down while they put it in. Once the nurse left the room I turned Isabella to me and said.. “Your cancer is back in your body. If you do not put this line in to get the medicine, this cancer is going to try to kill your body. You will become very very very sick and you will be in the hospital. You will not be able to come home and be with us. You might not be able to be with Mommy and Daddy anymore. Do you understand me? We want you to stay with us and to do that, you have to have this medicine!” I hated having to say this to her because she just looked at me and her eyes filled with tears. She said, “Mommy, thinking about not being with you and Daddy makes me so sad!”. I told her that it makes me so sad too, as tears fell down my face. I just held her and we cried together. How do you explain this to a 6-year-old? I shouldn’t have to. But in a way I need her to understand the severity of doing what she needs to do to stay with us. I feel like it opened her floodgates. She cried about having a port in and how she doesn’t want people to see it. She cried about looking at her heart box that she got on her last day of kindergarten last year and how she doesn’t see those friends anymore. She cried about having to be in the hospital again. It was just heartbreaking.
So now we finish up our chemo for the day. I look over at her sitting at the craft table with Stuart talking about what she is going to name her restaurant someday… My Mom and Bob are keeping the home up and running and all my best friends are scurrying around to pull this race together. My sister is crying at work because she is not here to make me a sandwich. Friends and family are desperately trying to find out how they can help.. what they can do, when can they come. All in due time… we will work out ways to help once we get our arms around it all. All the emails, texts, posts.. all mean so much. We’re just doing what we can today to find a plan.
And boy do I look like shit today. Caught a glimpse in the bathroom mirror and it scared me. I should not be allowed in public.
[9/27/11] September 27, 2011
Isabella’s radiation surgery came and went on Monday. I was blown away at how uneventful it was. The thought of something being done that was blasting away a brain tumor excited me. No needles, no stitches, no recovery. We were even to convince our radiation oncologist to hit the other spot on top of her head while she was under anesthesia. By the time Stuart and I had a recap discussion on the weekend’s events, she was in front of us on a stretcher waking up. They informed us that she might have some thinning hair and some serious fatigue since her body will be working overtime to heal itself. Dr. Cramaldi also sat Stuart and I down and walked us through her scans a bit. We were able to see what else we were fighting against in detail. A couple of spots on her femur and pelvic bones and bone marrow that was lighting up, but not strong. He also told us that Isabella was referred to as “the energizer bunny” and “the little girl with nine lives” in their meetings. Made Stuart and I both smile to think about how many times she has defied the odds and still keeps going. By the end of our meeting, Isabella was wide awake and starving, thanks to the steroids! We headed to Red Lobster and filled our bellies, still in awe that she was cutting up coconut shrimp after having a brain tumor filled with radiation just an hour earlier. She headed out to PetSmart with grandma to find Jake a birthday gift and played the rest of the day before zonking out at 8pm.
She even got up at 6:45 am this morning and headed back to her class at Marvin elementary to catch up with her new class. Now she colors in her coloring book, very excited about being with mommy and daddy alone on our trip to Philadelphia. We get to stay in a hotel and order breakfast to our room so she is pumped. Consult is at 10:30 am tomorrow with CHOP. Interested to see what they suggest. Anticipate a very blunt conversation but we are ready for it.
[10/7/11] October 7, 2011
It’s amazing how life can be so crazy sometimes that you run right past important milestones. Just 3 days ago it was Isabella’s 4-year diagnosis date anniversary. October 4, 2007 was a day that changed our lives forever. Honestly, each year on this date, I always find myself amazed at where we are in the process as well as the road we have traveled. Just recently we were told for the second time that this just might be it for our little girl. Hard to believe that conversation with Dr. Kramer that I had just a few weeks ago. I look back at Isabella now in the backseat of our car. Bright red hair (that is falling out quickly), a very round face from all the eating, and pure happiness in her eyes. We are headed to the beach as a family and she is preparing her American girl doll’s hair for the adventure. Her counts are good and we received platelets today so we are all set for a healthy weekend. We are taking some family pictures on the beach tomorrow that I am very excited about. I’ll look at these pictures one day and think, how did we keep her alive this long? We had to have done some things right. We may even be living a little on borrowed time. Hoping that the girl who has nine lives is not on her last one. Very rarely do we stop and acknowledge what we have accomplished. She’s alive (and happy), Grant is happy as a clam, Sophia is rotten as ever. Stuart and I are STILL married, but in desperate need of time to reconnect… But who isn’t? We get people that tell us all the time how amazing we are, how strong we are, how lucky Isabella is to have us fighting for her. And for the first time I feel like I can say, “damn right!”. I’m proud of our team and what we have done. Not only do we have the uphill battle every day but we do it in our own style and manage to keep it together the best we can. Not to mention the fact that while running uphill we have managed to raise close to $150,000 for various charities, mainly Neuroblastoma research. My mom and I were talking recently and my mom was saying how hard it is for her to understand all the good that Isabella brings to other people’s lives but how she has to suffer in the process. I’ve always struggled with this as well as I watch other children get to do all the “normal” things of childhood while she is hooked up to toxic treatments. But after thinking about it, I think of all the people in history that have suffered. But through their suffering, it brought something good. Maybe she is just one of those people in our lives that takes the bullet to make us all better people. Or maybe her suffering will help raise awareness and funds that will one day CURE all children. Who knows. Maybe this all my bullshit way of finding a purpose in this hand I have been dealt. Do I wish for a normal life with healthy kids? Of course, I do. But maybe then I wouldn’t have witnessed my husband having true unconditional love for someone, or how unbelievable of a woman my mother is, how true friends just rise to the occasion, how family that is so distant will drop everything for your needs, how amazing perfect strangers can be or how a community can rally around you just when you need it most. Isabella’s disease has pulled back the curtain on so many aspects of my life, and for that I’m grateful. Look, I’m not perfect. I know hundreds have come before me and have done this.. Done it better. I wish I had a handbook or cancer for dummies book that I could follow, but I don’t. I just have to keep waking up every day and continue to fight for her and do it the only way i know how.. My way. When the day comes that our fight is over, we will give her the most wonderful gift in the world.. A life that is no longer is about fighting. But until then, as Isabella says, “fight! Fight! Fight!”
Here’s hoping I’m writing next year with her still in my backseat.
[10/14/11] October 14, 2011
Busy week for us. Round 2 of chemo has started and we are on hump day. This chemo is very tolerable for Isabella so it’s been relatively easy. She is able to go to school in the morning and then we head to the clinic around lunch. After today’s infusion, we will come up this weekend for outpatient infusions and then watch her counts go down. The infusion days have been fun for her. The clinic is packed so day one was a visit with Grier and day two was with Joey. Even today the place is crazy!! Yesterday after chemo she was able to spend time with one of her fairy Godmothers, Miss Chrissy. She decided that it was time to take the red hair off so Miss Chrissy and her daughter Caitlyn shaved it off for her. When she walked in the house it takes your breath away for a minute but then you forget almost immediately that she had hair just that morning. I could tell she was a little nervous about it so we didn’t do school today. It helps to give her a couple of days become okay with it before she forgets all about it again. We also finished the steroids (thank goodness!). It takes a couple of days for them to leave her systems so the new added weight will start to fall off again soon. It’s so odd to see her with this added weight since clothing is always falling off of her. I also feel like I forget how alarming the new bald head can be. But walking into the hospital this morning brings back all those stares, those pity looks and the dreaded, “She’s beautiful” comment that everyone feels like they have to say. Ugh.
Scans are also coming up next week. Thursday we will spend the day at Levine’s, waiting to see what has transpired since our last scan. She responds very well to chemo so we are expecting to see an improvement. The scans are required for CHOP to enroll us in the MIBG therapy that will begin the following week. I was a little unsure about this upcoming treatment because I feel like every child who I know that has had this treatment still relapses. But after talking to another mother, she changed my mind on things. Her son had the treatment and it cleaned out his disease for 9 months. During that 9 months, he had a great life. Full of energy, great immune system, experienced wonderful milestones.. Even though he relapsed, that time that he had was so valuable. It’s changing our mindset to not think in lifetimes but in months. Anything that can provide some great months is worth it. So, sign us up. 🙂
Tonight we are heading up to Lowes Motor Speedway to be guests of Tony Stewart and Haas Racing. Cookies for Kids Cancer has a race car this year so we are going to check things out with some other families here in Charlotte. Not sure if it’s Isabella’s cup of tea but Grant will be in heaven. Sometimes things need to be cool for the other kids. At least they will have lots of food for Isabella. 🙂
Thank you to everyone who has been helping with meal and groceries lately. It has made a huge difference and prevents me from running around like a crazy woman. It makes me feel a little more in control that one thing is taken care of.
[10/20/11] October 20, 2011
It seems like the last 24 hours have been a blur for us. Up early on Wednesday morning to head in for a 9 am MIBG injection. After an MIBG injection, a port access, a flu shot and a neulasta shot, Ib had had enough. (The neulasta shot is a one time shot to boost her immune system instead of doing a shot every night. Awesome!!!). I was going to take her to school after but by the time we left the hospital, it was already 12:00. Later that afternoon I got the call from Kaplan’s office that told me that Isabella’s counts were already in the toilet. :(. No immune system, in need of a platelet transfusion and a blood transfusion, would be right around the corner. The night flew by as things were busy with dinner/baths. Miss Chrissy dropped off an adorable pumpkin outfit with an orange tutu that Isabella LOVED! She was prancing around in it when blood started dripping from her nose. We quickly ran to the bathroom and tried to get it under control. As you may know, nose bleeds can get scary quickly. Blood was pouring from her nose and down her throat so she started throwing up blood too. She was so upset about her new outfit getting blood all over it and freaking out at the sight of all the bold coming out of her. Because her platelets were low, she was unable to clot so things just kept getting worse. Stuart and I threw her in the car and ran up to levines. At one light Stuart even stopped a cop and got us a police escort to get us up even faster. We got platelets going and things eventually clotted. But around 11:30 pm we were headed out and it started up again. By this point her hemoglobin level had dropped so much from the previous nose bleed that I decided that Ib and I were just staying so let’s give her a blood transfusion over night. We had to be in early for scans so it made no sense to go all the way home. By the time we woke up this morning platelet levels went from 21 to 112 and hemoglobin went from 8.1 up to 11.5. Sigh.
So after that stressful situation, now I just sit and wait for her to come back from scans with my friend Rachel to distract me. We are hoping to hear results today. I know she won’t be disease free but we are just hoping for decreased disease. No new spots and a response to treatment. Baby steps that will take us in a positive direction going into MIBG therapy next week.
Keep your fingers crossed.
[10/20/11] October 20, 2011
Long day awaiting scan results. Let me start by saying that the disease is stable. But while Rachel and I were with her in recovery, Dr. Kaplan came in to discuss the scans. He told us that the spot on her skull was gone. The tumor in the back that was bleeding into her brain appears to be gone. What is left there now looks to be dead scar tissue. However, there is new disease in her abdomen and the spots on her bones are lighting up brighter on the MIBG scan, which means they are getting worse. We were told that she was not responding to the chemo. Not the news I expected to hear. As I was processing this and walking back up to the room, Dr. Kaplan stopped us and said there was a mistake and the radiologist was comparing her new scans to the wrong scans. Turns out the disease is stable, it is not getting worse. I stood there in total shock and then hauled back and punched him. (Just in the shoulder.. but I put some meat behind it.) First time I have ever hit an oncologist. And then I started crying… ugh. He pointed out that we aren’t seeing the effects of this second round of chemo just yet so this the first round has just prevented things from spreading. And at this stage in the game we should be happy with stable disease. He already emailed CHOP about her results and they responded with “SUPER!”. I felt like we walked to the parking garage a little numb from the roller coaster we just went on. What would initially have been news I wasn’t very happy with, ended up being news that I was ecstatic about because I got even worse news first. If that makes any sense…
So we pulled into the driveway and Ib crawled up to the counter in the kitchen and scarfed down some of Miss Chrissy’s pasta and meatballs. After she consumed her weight in pasta, she crawled up on Miss Chrissy’s lap and passed out. We moved her to the couch and tried to calm down from a crazy 24 hours. Just as I went over to kiss her head, I noticed it being warm to the touch. Temperature of 102.8. Ugh. I headed upstairs to take a quick shower since I was DISGUSTING. Stu agreed to take her up so I checked her again.. 103.4. Yikes.. Called the doctor, packed a bag, took it again.. 104.1. Stuart once again peeled out of the driveway and headed back up.
Can we catch a break??
[10/24/11] October 24, 2011
I’m not sure why I wait so long to update caringbridge. So much has happened since Thursday. What the hell am I doing with my time? Stinking facebook. So if we can rewind a bit.. Ib checked in on Thursday with a mad temperature. She of course hates being in the hospital so she was a total meatball for the first 24 hours. Visits from Nana and Miss Chrissy even had trouble shaking her out of her doom and gloom. I stayed over with her Friday night so when Dr. Osterheld came in on Saturday, he was finally able to get a smile out of her by telling her she was breaking free. I think policy is that we would have to stay until her counts came up but I feel like we are a little bit outside of the system. They immediately order antibiotics and send us out the door. Even when I pulled in at home Stuart was a little surprised to see us. That’s just how we roll. We had a busy weekend ahead of us! Sunday morning I got up and headed into the Ronald McDonald of Charlotte with some awesome helpers to cook brunch for the residents. They told us to expect 20-25 families so we cooked for the masses! We had about 15 people show up. Stinko. But we all still felt good contributing. 🙂 We packaged up the brunch so hopefully they all enjoyed it later. Thank you to the Matthews Family, Chrissy Bush and Friend, Cassandra Mooney, Blair Hogan, the McGrory Family, Christy and Julie Keagy, the Traub Family, Darlene Rawlins and Uncle Nate for all their help. You guys were all great! We came home after lunch and started getting the house ready for my Mama to come. The kids are always so excited when she comes and this time was no exception. It felt like old times again as soon as she arrives. Packing up for the Philly trip was odd this time. I know everyone has lots of questions about the process and I feel like I keep saying.. “I don’t know..” It’s been a long time since we have been to a new city, new doctors, new treatments.. I feel like a rookie. I have become a master with New York.. but Philly.. not so sure. Pack clothes I can throw away after wearing due to exposure, don’t know if we have a room at the Ronald or not, take a pregnancy test. Yep.. first time I have taken a pregnancy test before treatment. But we figured with the large amount of radiation exposure we thought it would be best to make sure. It was pretty funny though.. I looked at Stuart and he looked at me. Both agreeing that we would kill the other one if this came back positive. NEGATORY. Our flight was bright and early at 6:00am this morning so when the alarm sounded at 4:00 I wanted to crawl into a hole. Isabella was her normal nasty meatball self so that added to the experience. A layover in Washington DC and finally landing in Philly at 10. I called the Ronald to see if we had a room but they said they didn’t know yet. I told them ok, but we were coming to the house anyway. I figured if they had to stare at our mugs, we had a better chance of getting a room. After offering up a room with a community bathroom, which I politely told them no way, we were assigned a room. The room is great. 2 beds, a tv, a bathroom. It’s solid. And it’s $15.00 a night. Sweet. Ib and I headed out for the day walking all around town to figure out our surroundings while Daddy worked. We headed down at 6:00 for the house dinner and were pleasantly surprised! It’s amazing how different each Ronald can be! We were a little taken back by how friendly everyone was too. People talking to us at dinner.. doesn’t happen in NYC. We stick to ourselves up there.. very little eye contact. Here, people were so friendly and interested in Ib. Kind of nice.. maybe we have a hard candy shell that needs cracked a little?? NYC made us tough as nails I think. So now we are hanging in our little room. Lots of questions for them tomorrow as the Santos Family is welcomed to CHOP.
Man, that was a long one today. Phew!
[10/27/11] October 27, 2011
Quite possibly the longest night I’ve had in awhile. After shaking off the hospital creepiness during my break, I headed back in for more of the same. Ib was fast asleep by the time I returned so I crawled onto my “bench bed” to try and catch some shut eye. When you are trying to fall asleep in a room that no one will come in, your mind does crazy things to you. Bones in my body started to ache.. probably due to the “bench bed”. But, my mind races of harmful things going into my body. I fall asleep for a minute and I instantly fall into dreams of being killed in an arena. (Thanks to the Hunger Games series I’m blowing through.) Only to wake to a nurse sticking meds through the door for me to give ib. Ugh. Isabella also kept waking up telling me that she had to go to the bathroom. But since she is paralyzed from a catheter, she refuses to get out of the bed. So I’m left to consider.. clean up radioactive poop, or grab her and expose myself to her and get her to the bathroom. I call for the nurses to find out what to do but they just stand in the door way and look at like me like I’m an idiot. I try to grab her but she screams bloody murder. By the third time she tells me, I jump out from behind the lead curtain like a panther before she even knows what hit her. I grab her and place her on the ground standing.. then take off a few feet back. She has no idea how she even got there. She slowly makes her way to the bathroom and drops off a poop the size of a quarter. Really? All that for a quarter poop? I was hoping for a full toilet. This dance continued for most of the night with occasional med drop offs and then back into my dreams of tumors forming in my body or my reoccurring character in my book. When I finally wake a 9 I take a well needed coffee break. I curl up next to the trash outside our radiation room and sip slowly as I read my InStyle magazine.. serenity now. The docs come around and I’m instantly all over them. My plan of making friends before enemies has not worked out so well. Turns out that they had some “miscommunication” prior to starting the MIBG treatment yesterday. I was told 10 minutes prior to starting that they misread her road-map and it turns out that she is only 10 days out from chemo, their protocol for this treatment is 14 days. So with everyone standing by to start, I was told that I could pull the plug on the whole thing if I wasn’t comfortable but they feel it was okay to proceed. The only thing is that they might have to give her a bag of stem cells after the first round since her counts may not be as high as they would have liked prior to starting. We knew going in that we would use one after round 2 but we hoped to let her body recover after the first to save a bag since we only have 3 left. For little girl who is relapsing year after year, these stem cell bags are like gold. The idea of having to use one due to miscommunication between the doctors felt like a gunshot wound. We decided to continue with the treatment but I knew seeing the big dogs today would send me over the edge about the position they may have put us in for the future. As it turns out.. all hospitals are the same.. but different. No matter how prestigious, they still make mistakes. Mistakes that may cost you months or years down the line. You always hope these mistakes can be avoided, but here we are – starring at one right in the eye our first week in a new hospital. By the time Stuart arrives, I feel like smoke is coming off my heels. The BEST thing about this place is my walk back to the Ronald. In New York the walk is loud. Honking horns, people yelling at you, shooing pigeons out of the way, bald kids. When I leave here I am in the midst of a young university. I pick the scenic walk home through the green-way and love the hustle and bustle around me. People along the way passing out peaceful flyers to get your flu shot, advocating women’s equality, tickets to see Clinton speak, a fraternity concert of the Ying Yang Twins, James Franco’s coming to give a lecture. I walk past statues of our presidents, beautiful buildings, falling leaves, stones in the walkway with inspirational quotes in them. Ahh.. the last 24 hours are all but forgotten. By the time I walk into the Ronald and take a burning hot shower.. I feel new again. I get to catch up on my kids and hear my friends tell me their stories to take my mind of things. I have developed a good sense of leaving it at the door here.. my survival technique I guess. I pick up the next book in my series and have dinner with Stuart. Luckily we can joke up about the day or how the cafeteria is tearing us up. Ib sits quietly behind her curtain watching “It’s the Great Pumpkin Charlie Brown”. Things could be worse.
On the medical front, her level dropped down to 10 today from 37 yesterday. A 7 gets us out the door so we anticipate heading out tomorrow afternoon. A quick afternoon MIBG scan to make sure things are on the up and up is all we need. Ib is going to practically pull that tube out of her cooka if they don’t do it soon so it’s good timing. Heading out into the beautiful surroundings, being sure to not stop at the cafeteria on the way out. Everyone’s systems are in need of a break.
[11/12/11] November 12, 2011
Blood work from earlier in the week made us think we were homebound for quite a few weeks. However, when we went in on Thursday for our shot and a possible transfusion, they sent us packing. Hemoglobin and Platelets were still low, but not low enough for a transfusion. Her white blood count and ANC (Immune system) both went up substantially!! I couldn’t believe it! As soon as they told us, Ib instantly asked if she could then go to the Panthers game on Sunday. I made a quick call to our friend Amy and Make a Wish and things were set in motion. The topcats have asked Isabella to be an honorary cheerleader for Sunday’s game! A topcat came to our house on Friday to surprise Isabella with an invitation to the game, as well as lots of cheerleading goodies to get her prepared. She LOVES it. She has worn her panther’s shirts all weekend and puts on the warm-up CD they gave her and does all kinds of routines. It’s actually really cute. It was good time for her to do this since she struggles more and more with being on lockdown here at the house. Next week things will drop quickly and she is going to miss her first school field trip and the Taylor Swift concert on Wednesday that was rescheduled from the summer. 🙁 We decided to give the tickets to Make A Wish so hopefully another little girl will be able to have a wonderful evening. Make a wish is so good to us and we are happy to help them in any way we can. We attended a donor dinner for Make a Wish on Friday and were so upset to learn that their funding is down. Just this week they received 6 rush wish requests for kids that need to have wishes granted immediately due to the severity of their illnesses.
So tomorrow is a big day for us all! Even Stuart and Grant will be meeting Steve Smith and have field passes for the games. I love when Grant gets to feel special too. It should be a great day so if you are watching the game on TV – try to look for her!
Otherwise ib is doing okay. Anxious for transfusions because she seems so tired. But now that she is getting older, she knows she is tired and she goes and lays down. Just hoping to avoid fevers so we can hang out here at the house as a family.
[11/14/11] November 14, 2011
What a weekend!! It was nice knowing that Isabella’s counts were not in the toilet so we were able to get out a bit. The Make a Wish Foundation set Isabella up to be a Junior Top Cat at this week’s game and boy did they deliver!! It was an amazing day for Isabella and Grant. The girls were so wonderful to Isabella and really made her feel so special. She was up so early that morning, showered and ready at 7am so I knew she would crash at some point. When we got there, we were able to meet Sir Purr, Jerry Richardson (the owner of the panthers), Steve Smith and all the Top Cats. Ib had her own locker in their locker room with a uniform and all kinds of goodies. We all had field passes so we were able to watch the pre-game warm up. Steve Smith came over to Stuart and Grant and signed a game ball for him and took some pictures. He was so nice to us. The cheerleaders catered to Isabella all day. Carrying her, keeping her warm, giving her ziti.. By third quarter, we were able to find Miss Chrissy and Tom Bush in their seats and she curled up for a 3rd quarter nap. The nap did her wonders because she was ready again in the 4th quarter to cheer. She had her eye on Top Cat Stacey so she was excited to watch her and cheer with her. If you were at the game, you got to see Ib on the Jumbo Tron a couple of times during the game and if you were at home, she was on CBS with 2 minutes left in the game! She got all kinds of pictures and left with a huge smile on her face. So thank you to everyone who made it happen! I loved that Grant and Daddy got to have a special day too. 🙂 I decided it was time to keep her home from school… anticipating that her counts would be hitting ground zero. However, after I got the call today from Dr. Kaplan’s office – I have determined that I’m done guessing. Her immune system is through the roof! Her blood and platelet levels are still a little low but not requiring transfusions. So tomorrow, she is back to school! She is very excited about it! It’s so hard to guess with treatment that we are not familiar with. We were told counts would start to go down between 2-3 weeks from treatment. Wednesday will be 3 weeks and we are still okay.. Blood will be retested on Thursday so that will determine our next steps. It’s much easier to know what you are doing on chemotherapy so needless to say, this one has thrown us for a loop. We could of even gone to Taylor Swift on Wednesday night.. but I feel good giving them to Make A Wish. Ib had such a great day on Sunday that we can give up something for her to make some other little girl’s day. 🙂 We will be heading up to the clinic tomorrow for a small check up. Ib has blood in urine that we need to get looked at so we will see what they say tomorrow. But, excited to send her off to school. I’m of course sick and was hating the thought of wearing a mask around the house until I was back on the healthy track. At least now I don’t feel back hacking up a lung around her.
For those of you who are interested.. Check out this youtube video of ib: http://youtu.be/mUQ053jMN4A
[11/29/11] November 29, 2011
Results from Monday’s blood work are in and Ib is going strong.. I love saying that. Healthy as a horse and we are loving every minute of it. Well, we will be loving it even more after that scan next week. Ib is going to school every day still and I love hearing her tell me what she does each day. She is continuing to warm up to the idea of school and tell me things she learns and who she plays with. The past couple of days she has been playing with her new boyfriend. I ask her what his name is and she says, “I think it starts with a J..”. Love it. I also got sent a great link today from our friends at the Panthers. I showed Ib the pictures and she said, “Yep, I remember that day. One of the best days ever. I got to hang out with all my new cheerleader friends and eat ziti.” Seriously folks, I can’t make up this stuff. So we are still just enjoying being together, not having a line and not running up to the hospital or packing bags. I’m blown away each day at someone new I meet or an email I get from someone that has been touched by Isabella. We receive items in the mail, such wonderful letters from families and great dinners at our doors. Honestly, the majority of it from strangers that have heard about Isabella through someone else and then follow her story. I was always raised through my Grandma Culley to write thank you notes.. but I have done a horrible job of it during this process. When things are busy with cancer, I don’t have time.. and when things aren’t busy with cancer, I don’t have time. So I do want to thank everyone out there lately that has reached out to us or offered to help. It always feels weird having people do such nice things when Isabella is healthy.. honestly, it makes Stuart’s stomach hurt. But, I do have to say that it has been so wonderful to have little notes of inspiration in my mailbox, cupcake decorations arrive in the mail for Isabella or a healthy meal dropped off at the door. Tonight I watched my kids eat their weight in broccoli that a family dropped off while I opened a note from a new family that follows us through our friends the Blackmers.. it was pretty great. Thank you Thank you for continuing with us.. even when things are not in the toilet. 🙂
[12/13/11] December 13, 2011
It has been a crazy 36 hours for Isabella and I. 4 states in 36 hours to be exact. Flight from Charlotte to Detroit, Detroit to Philadelphia, Amtrak to NYC and then Amtrak back to Philadelphia. Plans needed to get modified because our dear friend, Miss Jenn is NYC took a bad turn over the weekend and they felt it was the right time for us to come in and see her. Ib and I visited with Miss Jenn and Ange this morning and it is something I will never forget. They have been such a huge piece of our New York puzzle and Jenn was someone that we fought cancer with daily. The amazing thing about cancer is that it allows you to meet such amazing people, but it also opens you up to a world of heartbreak in the process. I have talked with Isabella about the situation and she is so positive and innocent in the whole situation. Which is how you want them to be I guess. She can’t wait to see her in heaven she tells me and she will still come by and see Mr. Ange and her cats. :). So today we spent some time with Miss Jenn and I asked her to keep an eye on Isabella for me. Jenn is strong but her disease is stronger.. My heart goes out to them all.
Tonight Ib and I are back at CHOP. Things have been so enjoyable with her the last 2 days. Her energy level is high and her mood is good so she makes for a much easier travel companion. We are back in our home sweet plastic room and Ib is painting as I get organized. The team here has been so thrilled with her cancer’s response as well as her body’s lack of response with counts. We were told 80% of kids will require a stem cell recovery after the second round but I’m not counting Ib out just yet. They are anticipating clean scans after this round so next steps are in question. Maybe another MIBG therapy? Maybe back to NYC for humanized 3f8, maybe low dose oral chemo? We shall see. For now we are ready to get this second round behind us. Seems our whole holiday is on hold until we return and we need to get busy! They come in tomorrow at 8 for catheter placement and then treatment starts at 1:00. Let’s get this show on the road…
Wish us luck and please take a minute to say a little prayer for Miss Jenn and her family.
[12/17/11] December 17, 2011
We are finally sitting on our flight back home (well, after a layover in Atlanta!). We are excited to get home because it seems like we’ve been gone so long. Isabella’s radiation level reading was a 3 yesterday and it only needed to be a 7 to head out. She was thrilled to get the catheter out and her line. She had gotten blisters on the inside of her legs from the tube being taped down and her legs staying crossed so tightly for two straight days. We still just can’t get her to relax with the tube in. We waited until 3:00 to get a quick scan before we left and it couldn’t have happened any later. Isabella was breaking down slowly about the lack of contact she could have with people. It’s amazing how much the body depends on human contact to feel better. We ran out of there as fast as we could and checked into our hotel in the historic district. We took to the streets last night and tried to check out some Christmas displays at Macy’s, did some Xmas shopping and dropped into a yummy seafood place for dinner. This morning we did our traditional breakfast and swimming and even took in the liberty bell.
Ready to see the kids and get ready for Christmas. See you in Charlotte!
[1/16/12] January 16, 2012
Today was a big day for Isabella (and Grant). We got a surprise visit from Top Cat Stacey with a very special Christmas present for Isabella. Isabella was dressed head to toe in her Top Cats gear and waited at the front door for almost an hour for her to arrive. Miss Stacey brought her tons of adorable photos and a video of her special day she had with the team this fall. All of the Top Cat ladies signed her photo book with special messages and we have already watched our video three times tonight. I still got all emotional looking at the pictures from that day and still can’t believe that it was all put together for her. It was one of her favorite days of her life.. and she has had a couple of special moments. So thank you again Top Cats ladies for the gift that just keeps on giving. 🙂
Ib is still doing great.. we heard from Philly that they are putting her on the schedule for February 1st, pending no increase in disease in her scans on the 26th. So we will just sit back until next week to see how things come in.
[2/1/12] February 1, 2012
Sitting outside Ib’s room as the MIBG treatment is pushed through her line. This trip seems to be going by in hurry, which is good. We got up early on Monday for our Corporate Angels flight up to New York. Flying on those private jets is always the bomb. We arrive in NYC and dropped our stuff quickly so we could head out into the world. Of course, American Girl was on her list so we scurried over there to pick out a gift for being brave (getting a catheter). A hair styling kit and eyeglass for Abigail who apparently has bad vision seemed a small price to pay for a urine tube. Yikes. We then headed to L’Oreal to visit Miss Deb and our favorite L’Oreal ladies. Isabella is currently helping to design posters to advertise a Cookies for Kids Cancer Bake Sale on February 14th so she worked in their art department most of the day. We loaded up on products and hugs and even had a small birthday celebration with my favorite Crumbs cupcakes to finish off the visit. We then headed up to visit Isabella’s favorite cameraman, Angelo. It seemed so odd being back in his apartment since last time we were there we were visiting a very sick Miss Jenn. I remember telling her that we would stop by and visit her next time we were in town, but unfortunately, she was already gone. It was still nice to be in Ange’s presence without the heavy weight of sadness in the air. His photographs surrounded us so it was like Jenn was there with us. We miss her..
We took the train into Philly yesterday afternoon and checked quickly into our Ronald McDonald Room. We went from having a room with 2 double beds and our own bathroom to a room with a 1 bed and a toilet and sink with a community bathroom, to now a room with a bed and closet. I keep reminding myself that it’s $15 a night. But sometimes after a long day you just want to shower and clean up without feeling like you are at camp. Regardless.. We checked into CHOP and got a line and blood work. Conversations with the Doctors felt a little alarming. We were told that they were surprised at how well she had responded to treatment and that they honestly were thinking of telling us to take her home as well and do nothing. Hmmm.. Felt a little like the recent Grey’s Anatomy episode where the Doctors are flipping a coin to determine whether or not to do a treatment on a child with Neuroblastoma. We would like to think that everyone is always pulling for us and will try anything to keep her alive. Turns out, maybe everyone is guessing and constantly being surprised by her outcome. The take away from this conversation feels like a little added pressure on Stuart and I to determine her next treatment. We are exploring the humanized 3F8 option in NYC, mainly because it’s really the only thing we feel is out there. We aren’t getting a whole lot of options right now and we feel that we have to take it upon ourselves to find something for her. I was telling my Mom that I feel like Stuart and I are gerbils in those round plastic balls… running around, thinking that we are getting somewhere but really we are just running around. And with two gerbils in the plastic ball.. they are starting to bite each other. We are biting. I know it is our pattern of what we do in these crossroads – but I’m thinking we might kill each other before we figure out what to do. Who can blame us.. you want a high stress situation? Come walk in our shoes for a bit.. you might bite too. So once again I have to apologize to anyone we are snapping at these days. Know that we mean nothing by it – it is only frustration and utter fear that is driving us these days. It’s just scary to think that her last treatment is running now – and then we have no flipping idea what to do next.
So, lots of internet research will be done over the next few days. But who are we kidding.. as they say, the only thing the internet is good for is porn. (Line from the “Big C” on Showtime about a woman with cancer, but it is kind of true.) Emails, conference calls with doctors, grasping at straws to find out what to do next. Just feel like the research isn’t moving fast enough.. hence why we raise money.
Well, treatment is almost complete so I’m heading in to check on her. Now just waiting for her body to push it out of her so we can get out of this joint.
[2/7/12] February 7, 2012
Home from Philly and we are now in “house jail”. The treatment went fairly well as Ib seemed to know the drill. We only arrived home two days ago and already it seems like a dream. I’m excited to think that this treatment is not in our plans in 6 weeks. Philly was hard for us because we just didn’t have a family there. When you don’t really know the doctors and nurses and don’t have L’Oreal ladies stopping by or Ange taking pictures, it just feels weird. Lonely. We have been spinning our wheels trying to decide our next course of treatment. We had a conference call with MSKCC on Friday to discuss the Humanized 3f8 that is in a Phase 1 trial at Sloan. I think a lot of people have lots of hope around this new treatment. While I think it will do great things for some kids.. I’m not sure if it’s the right thing for Isabella. She has received 3f8 two different times at Sloan and both times she had a brain relapse while on it. The 3f8 does not cross over and treat the brain and spine so for some reason cancer just floods to those areas for her and causes serious problems. If she were to have another brain relapse, we might be in HUGE trouble because her brain can’t handle much more radiation. My fear is that no one will treat us and it will be our ticket home. Our doctors in Philly suggested a combination of low dose chemo and Celebrex which they have found works will with brain tumors. The low dose chemo that she would take orally will cross over and treat the brain as well. Low dose chemo doesn’t sound strong enough to us but we have so few options. I know what you are thinking.. Celebrex? Yes, celebrex is more well known for treatment with arthritis. Research is showing that celebrex fights cancer in a completely different way than it fights pain. They found that the drug plugs into a molecular keyhole on the outside of cancer cells, the so-called death receptor. This turns on a self-destruct program in the cancer cells that shuts of the cell’s blood supply.. in turn, causing them to die. Combining celebrex and chemo has shown promising results.. but will it show that in Isabella is the questions. We feel that ignoring her high chance for a CNS relapse is not possible, but we are exploring all the options. We have been on a low dose chemo with Isabella before. With her first CNS relapse, she was on a temodar regiment for 42 days at a time. This kept her cancer away for 18 months. Her time on it was so good in fact that we had Sophia and even released 18 pink balloons in the sky when she completed, signifying the end of treatment. 3 months later, the cancer came back. But this time we are smarter. We know that treatment will never be over. We may never pull her off. During that time she was not in the hospital, she didn’t need transfusions, her hair came back.. she had a good quality of life. And maybe that is just what we need. But, we may put her on it and things will blow up in 2 months.. you just never know. We just know that we need to buy time with her. Research and funding is so slow that we need to just keep her alive until something is discovered. So maybe that is what we do. We will have scans in about 4 weeks to see the status of disease or if there is any at all and in the meantime explore these options. Lots of BIG decisions to be made and Stuart and I are definitely feeling the pressure.
So while this MIBG continues to kill microscopic neuroblastoma we will wait. Her counts are in the toilet so we are trying to fill our days with as much as we can. Getting ready to do some at home manicures and pedicures for Valentines Day. 🙂 Stems cells on Friday take about 10 days to start working so we hope we can avoid fevers until then and will just build shop here in our house jail.
Small note.. Isabella’s little “boyfriend” Joey is not doing well. We were able to see him for a bit in the clinic yesterday but it was only a glimpse of the old Joey we saw a couple of weeks ago. This disease is so relentless and it’s scary to watch from the sidelines. I feel like I’m watching a family go through the thing we keep trying to avoid. I’m scared that our time is coming and it makes me even more nervous about our upcoming decisions. It was heartbreaking to see him all curled up on his Dad’s lap yesterday, just trying to be comfortable and allow the pain meds to work. I get so angry seeing this and I don’t know what to do.. They have been on my mind all day. I know they have strong spiritual beliefs so I’m hoping that it is helping them during this time. So if you believe in the power of prayer.. say one for Joey. Isabella just loves that little boy and he and his family don’t deserve any of this.
[3/12/12] March 12, 2012
It’s crazy to think that my little girl is 7! Seems like yesterday that I was miserably pregnant with her.. although for awhile it seemed like I was pregnant all the time I guess. We had a full day planned to celebrate on Friday but a call from Kaplan’s office changed things around when we learned that she was in need of blood and platelets on Friday. Ugh.. I felt bad that I had a small breakdown with our nurse, Sarah about it. I think I was just upset that cancer keeps interfering in our lives. Just when we thing we are breaking free a bit, it pulls us back in. The clinic was amazing though.. They decorated ib’s transfusion room and had cake and balloons and gifts out for her. It has been a part of Isabella’s life for so long that I don’t think she even realized she was missing out. But as a mother, no matter how wonderful the clinic makes things.. you still don’t want her there. While we were there, we also got a call from NYC and were surprised to hear that one of Isabella’s four bone marrows tested positive for neuroblastoma. This came out of left field for us because we thought she would be squeaky clean. The amount that they found was very very minimal, but what it did mean was that treatment would take another route for her. We were exploring treatments for No Evidence of Disease and now we have to switch gears. A call with Dr. Kramer in NYC made us even more uneasy. While the disease was minimal, they were very discouraged to find disease at all and feel like that her blood counts are not recovering well enough to make her eligible to start any other treatment. Stuart and I kept saying, “okay.. well then what do you suggest?” because she conveyed a pressing need to do something immediately before things spread and got out of control quickly. But honestly, we didn’t get much of a response. It was almost as if NYC has kind of thrown their hands up with few options. I don’t know if we are not fitting the mold of disease/counts that they want to be enrolled in something out of NYC but it is frustrating to say the least with the lack of direction and guidance. So once again we spoke with Dr. Kaplan here in Charlotte and explained our frustrations. He told us that there was plenty of options available and that he would referee between all 5 of the hospitals that we are currently in talks with and come up with options. So, on Tuesday Stuart and I will be going up to discuss possible options with him. We do feel the need to start something sooner rather than later, but with Isabella still receiving transfusions every once in awhile, we don’t want to do something to strong that will knock her on her butt. Honestly we are just trying to get our arms around what we are dealing with. While things are not alarming, we feel that we need to proactive and make the best decision possible. All of this going on the day of her birthday which felt horrible. But I guess it made us all the more motivated to make sure she was here next year celebrating another birthday with us. I’m hoping to update tomorrow with a plan…
Isabella did have a wonderful birthday weekend. I remember when birthdays were just one day.. now they turn into weekend celebrations! Thursday night – Sunday afternoon. Great Wolf Lodge, a horse party, etc.. She is very excited to use all her Target Gift Cards this week to buy toys for the oncology playroom of Levine’s. So thank you to everyone who sent her one!! Going to be quite the shopping cart!! The other thing we are asking from our supporters is to give blood at Isabella’s first annual blood drive! It seemed fitting that we do a blood drive with all the blood products that Isabella has to receive.. even on her birthday! We are hosting the blood drive on Saturday, April 14th at the Marvin Creek Clubhouse here in our neighborhood from 12-4. I really want to blow it out of the water and fill all the scheduled appointments. Which will be close to 100 donors. I think we can easily do that with all the supporters we have. It is very easy to donate and 1 donation can save up to 3 local lives. What else are you doing on a Saturday that saves lives, right?
[4/2/12] April 2, 2012
Days are flying by on this new treatment plan and while it is easy.. it is stressful. Ib has gone back to complaining of little aches and pains every once awhile. I try to stress to her how important it is to be honest about what her body is telling her. But I also try to remember that she is 7 and sometimes “my tummy hurts” just means she doesn’t want to go to school. With scans about 2 months away, I’m not sure if my mind can hold out until then. We go in to talk with Dr. Kaplan tomorrow for our weekly check up and we will at least schedule a monthly urine collection to watch her indicators. I’m also anxious to hear how soon the new trial will be ready since we are sitting back waiting for that to start. Three calls from the school over aches, pains, rashes is about to send me to the mental institute so something is going to have to change soon. I feel all a mess inside because I keep writing these things off but wonder in the back of my mind if the cancer is running rampage through her little body. Even easy and quiet treatment doesn’t stop the nightmares from coming.. and this is no different.
[4/14/12] April 14, 2012
Up early this morning.. excited to get going on the blood drive. It feels like the 5k for me in a way because I feel like it’s consumed me a bit for awhile. I realized that I was talking about it too much when we went for our clinic visit yesterday and Isabella was pushing her blood drive to all the nurses and doctors. Wish I could say I put her up to it, but maybe she it just a sales person at heart like her Daddy. Who can resist her asking people to come to her blood drive to “raise blood for kids with cancer?” I mean really??? As of this morning we have about 60 of our 80 appointments filled. In my head I’m hoping to get 100 units of blood today as my goal but it may be a little unrealistic. I guess maybe it’s just so important to me because I know how big of a deal it has been in our family’s lives. I don’t know how people can work for organizations like CBCC because it gets so personal to me when people don’t want to help. I know I could never do it for a living because people telling me they are afraid of needles or might pass out makes me want to scream. If they saw how many times Isabella has been poked with needles, they would feel silly saying it. I know everyone has fears but my daughter has to face her fears every day.. at the age of 7. I wonder when I get back to an “old” life if I would work non-profit after all we have been through.. I know my own boundaries and I know it probably isn’t possible.. too close to my heart. So anyway.. I want to thank all of you in advance who will face their fears today and give. Sadly, the first time I ever gave blood was with my mom at Victoria Martinsen’s blood drive a couple of years ago. She later lost her battle with cancer but from her drive, I became a life long donor.. Hopefully this drive will make some of you life long donors too. 🙂
In other news, if you can’t tell from my posting already.. I feel on the the verge of a breakdown. Yesterday we went into the clinic for a check-up and a urine test. This urine test is just doing a monthly check of her numbers to make sure they are not rising.. meaning the cancer is back in a big way. Little aches and pains from Ib are sitting in my stomach and I hate that these monthly urine tests are going to do this to me. She sat on my lap while she got blood drawn (a needle going into the chest in her port for all of you wussy’s out there…) and she was noticing we were wearing the same earrings. As Nurse Sarah took her blood she was talking about how we were twins. How when she is my age we will look just alike. We will have the same hair, and be able to share clothes and stuff. Just normal 7 year old talk.. But I felt the lump in my throat because I knew that this statement would probably never happen. Tears started to fall down my face into the mask I was wearing as I just said, “you are probably right ib! I can’t wait for that day!”. I don’t know if it was the urine test that was bringing me fear or what.. Even when we left, I watched her run and play at home and instead of being happy.. i was just sick. I sat with friends and tried to take my mind of it but finally had to excuse myself to take some meds. I felt like something inside of me was screaming and I was going to have a full breakdown in someone’s kitchen. Last night I was asleep in my bed before the kids were even asleep. We won’t hear anything for about a week and I’m afraid of what this week will bring me in my head. After this next round of at home chemo, we will do a full set of scans and I feel like I might throw up just typing it in. All the work we did to get her here, the MIBG therapy, the house jail.. all of it can’t be for nothing. And so help me god, if I go through this breakdown every month on urine checks.. I just might kill someone.
I know, not my usual CB post. But some days I just forget that everyone is reading this and write just for me. I write so that I don’t have to vomit all of this on a friend, or Stuart or my Mom or Sister. Many times I can write this and then instantly feel better. I’m hoping today this will be the case. I’m going to finish my coffee, shower and then try to look my blood drive best as I put on a smile today and do what I can to save lives.. even if I don’t feel like I can save hers.
[4/25/12] April 25, 2012
Pardon me while I stepped away from CB for awhile.. After all the momentum from the blood drive and basic life, I felt a little beat. The blood drive was a HUGE success! We had just over 100 people in attendance and 77 units of blood were collected. That means over 200 local lives were impacted! Love it. I’m always blown away at the people who support us. Of course, there is always a consistent group of people including my close friends, neighbors and family members. I loved seeing high school kids there! And lots of people from kids at Elevation where Ib sometimes attends. But there were lots of people there who continue to surprise me. If I can just share about one person for a minute… I have a friend, Marianne Painter, who amazes me at every event. I worked with Marianne at LendingTree about 8 years ago. We worked together but weren’t “close”. We had lots of mutual friends and would see each other at events but never really got to know each other well. When we both were no longer working with LendingTree, we still saw each other at preschool pick up and would exchange “hi’s” and small talk. Over the last 4 1/2 years since Isabella diagnosis, for every relapse, every event, every road bump, Marianne has been there. She signs up for dinners, has attended every 5k since inception, she is at the blood drive.. you name it. And after every event Stuart and I take notice. Just someone in our daily life that continues to surprise us by her support. It’s just the little things sometimes.. just showing up. Sometimes it feels like pulling teeth to get people to be there when you need it and sometimes people just do it without being asked. But I wanted to take a minute to thank people like Marianne who continue to support us year after year without being asked. We have a couple of people in our lives who provide consistent, quiet support and it doesn’t go unrecognized.. So thank you to all of you who do this for us.
Nothing brings you back to life like test results. I was hoping to not receive them while we were away so that we could relax. But a doctor visit yesterday had them waiting for me. Her last urine test came back in the normal range. (Normal is under 8 for one number and under 10 for another.) These tests came back and 10 and 12. Just slightly elevated but nothing scary. What it probably mean is that the small amount of disease she had in her last scan is probably a little bigger now, but not by much. Our last round of oral chemo was a very tiny dose we were expecting it to not do much. This round that we are on now is almost 10 times the last dose. So we are thinking that the stronger dose will help this time. Also, urine results can be elevated due to things in her diet so the numbers are hard to judge. Dr. Kaplan said that he didn’t feel like the numbers make him want to scan her or make him worry. Of course we would prefer to them to be in the normal range but a small increase like this just means that she is probably still living with cancer. But the cancer is not taking over her body.. it’s just hanging out. Scans are scheduled for May 8th and 9th and those will give us a better idea of what is going on. Until then, we continue our low dose regiment from home. Ib feels good though.. she is hilarious to talk to. Such a grown up mind in that little body. Overall she is enjoying herself and the amount of time not being spent in the hospital. Quality of life? Check. I guess that was our goal, right?
[5/13/12] May 13, 2012
Our world has been turned upside down lately as scan results from Wednesday showed progressive disease for Isabella. The call from Dr. Kaplan seemed like a blur when he started reading off all the bone spots that lit up with cancer. Legs, pelvis, hips, shoulders.. I started to zone out. Stuart and I were prepared for things to grow a little, but maybe not at this rate. We discussed so many different options with Dr. Kaplan but many of the options could not be determined until more results came in. Stuart and I have agreed that intensive chemotherapy is not an option at this point and Kaplan agreed that her body had seen the majority of what was offered so it may be pointless at this stage. Calls and internet research have filled our last couple of days as we quickly try to find something to put her on. We had hoped to start the DFMO/etopiside drug trial on Friday but were unable to start due to her platelet count. Doctors in NYC agreed that this is our best option at this point to keep her comfortable and out of the hospital. The problem with this drug trial is that the first 21 days she will take DFMO alone twice a day. There is not much research on this drug so we don’t know if it will make her disease stable, or if it will run crazy through her body. Around day 17 we will do a set of scans to see what we are looking at. If things are stable, we will start another round of DFMO plus a small oral chemo (etopiside) on top of it for the remaining 21 day cycles. This is a phase 1 trial so there is no guarantee that this will do anything for Isabella. And the scary part is that we will know the answer very soon. There are just so few options for Neuroblastoma. We keep thinking that the research is coming but I’m afraid in her case, it is coming too slowly. On top of all of this, Isabella has been deathly sick since Wednesday. She is vomiting and not eating or drinking. We have tried everything we can to get her going but finally bit the bullet and brought her into Levine’s this afternoon to be admitted. It’s not what we wanted to do but we need her healthier to start the trial on Monday. It’s an oral med that she will take and we need her to not be vomiting so that it can at least try to work. So Mother’s Day is spent up here with her, cuddling in bed together. My Mom decided to stay the week until we can see if Isabella can pull out of this and provide me with some added support. To say that Stuart and I are scared is an understatement. We have been given bad news so many times that you would think we can handle it by now. But still each time it rips apart our insides and rattles us to the core. We have retreated into our little house and have put up some shields around us until we can get ahold of things. So apologies for unreturned phone calls, texts, etc.. Right now we just want to get her a little healthier, start the trial and then sit back and wait. If it is not working, we should know pretty quickly. She’ll start complaining of pain, headaches, lose the ability to walk, etc.. We’ll watch her like a hawk to monitor the disease progress and try to hold on as tight as we can. We will updated when we know more.
Thanks for continuing in her journey..
[5/16/12] May 16, 2012
I feel like I go through these times lately a lot.. where I just hate CaringBridge. I hate reading other people’s caringbridge journals, I hate writing in my own, I hate people telling me I need to update it. I think everything I read out there is bad news, and all I have to report is bad news. Nothing worse than your life sucking a big one and having to write it all down. Our Sunday fluids turned into an overnight stay and my Mom extending her trip to help us out. I just felt better knowing she was getting fluids while she slept so Ib and I curled up together and snuggled in. I knew my Mom had things under control at home. The clinic wanted us in at 7:30 the next morning so we stumbled over and then proceeded to sit in a small room for 3 hours while we waited for word on our clinical trial. I get stubborn during these times of how I can handle things alone.. but those were a long 3 hours. Ib’s vomiting, the head pains, the stomach pains.. I just held her for 3 hours in the chair while she slept on my lap. I tried to stay busy on facebook, words with friends, people.com.. but tears just ran down my face. Pure sobbing. Sobbing because I’m scared or as always pissed off that we are in this situation again. Sobbing because I can’t believe that my daughter’s life hangs in the balance of a Phase 1 clinical trial. I feel like we should of been smarter than this.. how did it come to this? How is this all that is left? You keep telling yourself to keep her alive because something is coming down the pipeline that is going to be “the cure”. When in fact.. there isn’t shit coming down the pipeline fast enough to save her and it makes me want to scream. All year we try to raise money and it seems like it’s never enough … how much do we need to raise?? Drives me crazy. So by the time they tell us that they have the drug and we can move back into a private room, I’m about ready to jump out of a window. Now we move to how to get an powder, mixed with juice (that ib hates) down her and stay down her when she is throwing up every couple of minutes. The fact that we got it down her was a miracle. Luckily, one of my BFF’s Charlotte came up just in time to keep Isabella busy with stories of raccoons, possums, bunnies.. you name it. Keep her focused on not throwing up for 30 minutes so the drug can hit her bloodstream. How we were able to do it is beyond me.. but she kept it down. The next couple of hours were some of the worst in my life. We watched Isabella become so sick and scream in pain from headaches. We have seen this before and it was due to a tumor in her brain. She looked so scared and just grabbed onto my hand and looked at me. It was heartbreaking. I called the staff in and told them to put her in the CT scanner and look for a tumor. Something was dramatically off. In that time, I had my Mom call Stuart who was traveling and told him to come home immediately. I was 100% certain that the cancer had spread and we were not in a good place. Stuart was frantically trying to get back on a plane for a 5 hour flight and I knew it was KILLING him that he wasn’t there. She tried to talk to him on the phone and I could hear his fear over the phone.. he knew it too. He just kept telling me, just make sure she’s not scared.. I’m coming. We didn’t know what to think. By a miracle, the CT scan did NOT show any cancer in her head. The oncologist thinks that since her bone marrow is positive, the cancer is just passing through her bones and expanding them, causing pain when it passes through her skull. In conclusion.. they don’t know why she is in so much pain or so sick.. they are guessing. Once we got her knocked out and comfortable, we took her home. We loaded up on high pain meds, meds for vomiting and IV fluids each night to continue to try to bring her back. She just lays around now.. I think she is just weak. We try to get food and drinks down her and were finally successful last night thanks to Ib’s favorite meal being dropped off. Each morning we hope to see the old Ib, but this morning she still wasn’t there. Stuart and I just sit around her, giving her love and making her comfortable. We are on day 3 of our trial and we just pray that her body is strong enough to give it a fighting chance. We have seen this before in her and she eventually comes around… We just hope that it will happen again and she will surprise us all. But we know the battle may eventually be lost… So we all just sit around and wait.
[5/22/12] May 22, 2012
Every day I think about updating but to say our life is day to day right now is an understatement. The end of last week was absolutely horrible. Ib would not eat, she complained of constant stomach pain and head aches and would not get out of bed. It was the saddest thing to witness. After laying in bed all day I would bring carry her downstairs to try to get her going. She would sit on my lap and just cry. She just wanted to be back in bed. I would ask her if she wanted me to snuggle with her and she would say, “No. I just want to be alone.”. For our Isabella, this is an odd request. I would take her back up to bed and come downstairs and cry my eyes out. This relapse is different this time. Every other time we have relapsed, the doctors would tell us how bad it was but agree that we must continue treatment because she would be running around and playing. This time she is not that way. She is not as strong and not fighting. She doesn’t seem to want to get better. Maybe her body is just so tired of fighting and is starting to give up? Stuart and I have always taken clues from her on what to do with her treatment. But this time it is hard because we look at her and know that she could not longer handle a high-dose treatment to wipe her clean. She seems miserable and sad and it’s hard to watch. The doctors don’t know why she is so sick so they offer no advice. It feels like they too have washed their hands of us a bit given her current state. But we keep trying anything we can do to bring her back. We see small glimmers of her when we do things she loves. We visited Lucy our new little puppy who only has a week left in training, her BFF Soleil spent the night on Saturday and we took her out on the lake on Sunday for a bit. She will do good for a time period but then fall back into her quiet place. We are heading to the beach on Thursday for the holiday weekend, hoping the sand and the seashells will get her going. I’m deathly afraid of our scans the following week because if we have shown any disease progression on this study, we will be pulled from it. Our world could crumble in just one week. I pray that she is stable so we can start our second round of the trial. The second round will include another drug on top of the DFMO. It is a small oral chemo that will be given that will hopefully attack the cancer that is on her bones and bone marrow. But little aches and pains in the spots where I know the cancer is present makes me want to throw up every time she points them out to me. Everyone is asking what to do.. but sadly I don’t know what to answer. It usually takes me a couple of days until I can talk to anyone but this time it’s taking even longer. I’m hoping stable scans will give me some balance to crawl out of my dark hole a bit. But until then it is just a waiting game while my stomach is in knots.
Will update from the beach to keep you informed of her progress.. Hoping for more glimpses of Isabella.
Also I wanted to say thank you to Madison Brent and her family. Madison held her Sweet 16 birthday in honor of Isabella this weekend and raised over $2500 for Neuroblastoma Research! Such an amazing thing for a young woman to do. Thank you so much Madison and Happy Birthday! Here’s hoping the money you raised will accomplish big things. 🙂
[5/28/12] May 28, 2012
We are on our last day of our annual beach trip and as always it is filled with ups and downs. We are still working on this clinical trial.. which I hate. Once Ib takes her medicine in the morning, she goes swiftly downhill. We have small glimpses of her when she wants to play UNO or put on a princess dress. But otherwise, her days are filled with tears, coughing, pains and vomiting. Stuart and I have said that it is like watching an old woman. She moves around slowly, grabbing her hip as she walks, not able to bend down to pick something up because it hurts to do so. We try to take to take her to the beach but after a couple of minutes she crawls up on our laps and asks us to take her home. She fell asleep on Stuart for a bit yesterday so it was nice to at least she is getting fresh air. We watch the other kids run and play in the waves and thankfully my big sunglasses hide the tears that run down my face. I feel like we are slowly watching her die and it just kills me.. We go through time periods where we get mad and tell her that she has to get out of bed. Even if this is the end, we don’t want it to go down this way. But we realize that maybe the way she wants it is to just lay on the couch and watch Annie with no one bothering her. I know she is getting old now and doesn’t want us cuddling all around her. She wants some space and some quiet time which is hard to come by in this house. A persistent cough that is with her makes Stuart and I connect eyes every couple of minutes as we share in our heartache for a brief minute. You wonder at this point if it’s the drug, fighting off cancer. Or at least you hope that is what it is.. and not the opposite – cancer just blasting through her little body. I’ve become absolutely impossible to be around at times. I want to be with her, but being with her is hard. I don’t want to talk about it but if you come around me and not ask about her.. I want to rip your head off. I can talk about other things or listen to other talk but inside I’m screaming. Fun huh? I remember reading other Mother’s journals and reading how they would freak out that other people would just be living their lives.. talking about what seems like nonsense. Seemingly unaware that you are struggling with the fact that you might lose your daughter in the next 30 days. And now that is me. I hate to even write it because it makes people have no idea how to even be around me… but there it is. And I hate it. I’m passing the time here trying to be busy with Ib’s Foundation stuff and enjoying the beach and weather. Grant and Sophia both caught a bug on this trip so we are 3 for 3 on vomiting which is about right for the state of my life. But I am enjoying watching Grant and Sophia run and play. They are VERY unaware of what is happening which is good. I am thankful I have them to keep me grounded and positive. And my wonderful Mom steps in at just the right time to give me space or a moment to gather myself when needed without even asking. Stuart and I share hugs and glances that make me know we are preparing to go through something big together and we are going to try our best to be strong for each other. At the end of the day, my hope is that I look back on this entry in a year as we are at the beach with her next year and she is running with her brother and sister. Silly journal entry I think to myself. That is my hope.
So tomorrow we leave and head straight to Levine’s for a check-up. Scans are getting scheduled and I’m being a total bitch with Kaplan’s office about it. I don’t want Isabella to miss her end of year party and they have scheduled them on that day. “It’s not happening on that day so move it.”, I tell them. I don’t know if it’s because I really want her to attend this Wednesday party to see through this kindergarten year, or if I’m not ready to know what the scans say. I’m sure I’m not the first psycho Mother they have dealt with. But I have a feeling when I rattle off the list of aches and pains.. they are throwing her in the scanner regardless.
I just feel so hopeless.
[5/31/12] May 31, 2012
Well, here it is. The journal entry I have been dreading for almost 5 years. The day has come when Isabella’s cancer is finally winning. The scans on Wednesday told us that Isabella’s spine from her tailbone to her neck is covered with disease and tumors. All of this on top of the disease that she already was fighting in her bone marrow and bones. We asked all the right questions, uncovered every stone. We were hoping that the new tumor would be able to provide us with a tumor sample that we could send of to CHOP to see if she was eligible for a promising new treatment. But the amount of disease she has and the locations make us ineligible. We knew the news was not going to be good but we thought a good night’s sleep would help. But when Stuart came to bed around midnight, he woke me as I was wrapped around Isabella to tell me that the oncologist had sent him an email. Discussions between Charlotte and CHOP came to an agreement that our journey will be ending. They suggested possible radiation to relieve her immediate pain and then hospice for the remainder of her journey. Stuart and I had the hardest discussion of our life at our kitchen table and finally woke my Mom around 1:30 in the morning to tell her that our fight was ending. We have been sobbing the last 24 hours and it’s hard to pull ourselves out of the grief we are feeling. She has been fighting hard for so long that it goes against every we are to stop.. but it is time. Her body is tired and weak and we are up against a battle we cannot win. We have decided to do intense radiation to her entire spine over the next three days to relieve her discomfort. We are planning a family trip to Disney World that will take place this Monday given no emergencies in the next 4 days. Our immediate family started arriving today to see her and close friends and family will continue to drop in over the weekend to see her as well. We are hoping that she is well enough to go to Orlando because it is the happiest place on earth for her. When we went for our Make a Wish trip several years ago, we stayed at the Grand Floridian Resort with a room that overlooked Cinderella’s castle so we could see it at night all lit up with the fireworks shooting above them. Tomorrow I will be on the phone, trying to line up the same trip in the hopes that we can give her one last gift before she passes away. Grant and Sophia will be joining us so my Mom and Bob will come too so we can devote time to making things special for her. Stuart’s Dad and Katherine might also join for some added hands. When we return, we will line up our Hospice and settle in for an awful ride. I know it sounds terrible but I wish that God would let her just pass away in her sleep the night we return from Disney. All I want is for her death to be peaceful and without struggle or fear. The oncologist today went over a couple of ways that she could pass away and every single one breaks my heart. She deserves more than this and I’m beyond pissed that the end will look like this for her. We have not yet told her what is going on, it will wait until after the trip. Until then we all take our moments snuggling up to her and then excusing ourselves for our breakdowns. We ask during this time that only people who are in our “inner circle” come to the house. This last 24 hours have been so difficult and we need to do what is best for Isabella now. We are losing more and more of our Isabella every day and I just want to spend my time seeing every last minute of her that I can. Thank you to everyone who has been a part of our journey and helping to find her a cure.. I just wish it could of come sooner.
[6/3/12] June 3, 2012
The days seem to be flying by, but is some ways they are the longest days of my life. Each day we watch as Isabella sleeps and withdraws herself a little bit more. She doesn’t want to be around people much and retreats to my bed every chance she gets. She still has small minutes of herself each day when she will perk up and ask for milk, corn casserole or ravioli. We mainly just lay quietly with her. Our immediate family came in this weekend and while I know the noise was bothersome to Ib, people needed to be able to say their goodbyes. It was a good distraction for Grant and Sophia as they just play like normal. People who are very close with Isabella are able to crawl in bed with her for a moment with her and it’s become hard for me to watch how many people she has a deep connection with. I’m trying to hold it together the best I can but I’m weak, sick, shaky and tired. I feel waves of panic attacks coming over me that are only made worse by my diet and sleep patterns. Even today, just going through Grant’s drawers to pack a bag gave me such a hit of panic that I had to stop and lay on the floor to compose myself. Of course Grant walks in while I’m on the floor and says, “Hey Mom..” and walks back out. Everyone has been wonderful.. so I hear. My besties have set up camp across the street and funnel everything through so that we have our private time. They have organized an unbelievable trip for us to take Isabella to Disney World that they are walking us through any minute. I’m not aware of who gave what or really what we are doing. I think they are shielding me from feeling the need to say thank you to people. They are keeping a list for me and when the time comes, I will be able to walk through it. There are friends and your life, and then there is what I have. How I am so lucky, I will never know. We are doing horrible things like talking to hospice about funeral homes, what to do if she dies in Disney, how to talk to our kids.. But I’m also getting moments last night where Isabella and I took a bath together and I washed her up and talked about all kinds of things like what animal we would like to be.. she of course would be a bunny. I got her out and dried her hair and we cuddled on the couch. Hospice suggested a book called Dragonflies and Waterbugs to help talk about death to children. It’s a great book about this family of waterbugs who will occasionally crawl up a stem and not come back… even though they seemed very happy in their waterbug family. They made a pact that the next person that goes will promise to come back and tell what is up there. But when the next bug goes up the stem, she turns into a beautiful dragonfly. She loves to fly around and can see the waterbugs below. But when she tries to return, she can’t get through the water. Instead she will have to wait until someone else in her waterbug family decides to join her as a dragonfly so they can fly around together. I’ve only read Ib and Grant the book but will use it as an example when the time comes. So today we leave for our last family trip as 5. I can hear Charlotte in the kitchen walking Stuart through the details. Even if Ib can’t leave the room, we can see the castle and the fireworks from the window so we can experience as much as we can. I have been blown away with the people who surround us now. The cream of the crop has floated to the top and wrapped us in their love. I know that we are being taken care of and although I’m in daze, little eye contacts from people make me know that I’ll be okay because they will be with me every step of the way. Now I just hope that this trip will provide Isabella with the most magical gift we can provide while she is still with us. The next gift we can give her will be all to soon.. to never be sick again and run through bed of flowers as fast as she can with kitties and bunnies running alongside her.
[6/5/12] June 5, 2012
I’m sitting in a totally black room with Isabella. Although her enjoyment of Disney has come to a screeching halt, I’m positive that this room is providing her comfort. No light, no doorbell ringing, no dog barking, no noises below. The only sounds we hear are the occasional train whistle from the magic kingdom or the toot of the boats outside. Very calming for her I would think. I wasn’t sure we were going to make it here honestly. We had an episode on the plane that made me think she was going to die right in my arms in the air. I have never been so frightened and the faces on the family members around me made me know it was heartbreaking to watch as well. We finally did arrive and to say the red carpet was rolled out is an understatement. Our rooms overlook the castle and Isabella and I watched the fireworks together that night. Yesterday morning we had a private breakfast with every character imaginable. I’m sure it was overwhelming for her but she tried her hardest to see all that she could. Her breathing was fast and she was weak but she made sure to get her autograph book out for them to sign. We were given a private tour guide to take us to the magic kingdom. Isabella loved the small world boat ride so we went to get on the boat. As we went around the ride, she told me that she was not able to see. She kept covering one eye so that she could focus but it became just too hard for her. I had the guide take us back to the room and we snuggled into our dark hole together. She wakes briefly to ask where others are, but then curls back into her Miss Chrissy blankets and pillows. This morning I got her into a warm tub and shutter at the body I see before me. It is a shell of my daughter. A sunken belly, shoulder bones, spine and hip bones protrude out so far it punches me in the gut. I wash her gently as she leans against me for strength. I carried her around the grounds a couple of moments ago, just to feel the sun and wind on her face. She thinks it is beautiful and covers one eye to look out at the castle. But her vision makes her sick so in she goes, nestled back into her dark, soft bed.
My friend Angelo told me that death can be a beautiful thing if you can really see it for what it is. While I’m stricken with sadness, I see what he means now. The outpouring of support and love is like nothing I have ever seen in my life. The years I spent wondering where I fit in Isabella’s life, are finally producing answers to me. I am at a constant struggle with being her mother. I am the one who has to give her shots, tell her she can’t play with friends because she has no immune system, take her to the doctor, give her medicines, all the things she hates. I have to be her mother and keep her alive. For years I felt like she was running from me because I wasn’t the “fun” one. I’m the one who says no. But as I see her approaching death, I am who she wants beside her. I am quiet and calming to her. When she feels me beside her, she crawls into me and feels safe. It’s as if it is her last “thank you” to me for all that I have provided. Maybe she knows it’s what I need to move on after her death. To know in the end that I was her mother in all sense of the word. It was her and I in the beginning and it is her and I in the end.
Now if I can compose myself for a moment, I will tell you all the wonderful things about these past couple of days. Stuart. Stuart is a rock. He can drive me crazy in life sometimes but he is 110% of what I need right now. We tag team this phase with ease and lean on each other constantly. He is amazing with Isabella and I know he is breaking inside. But yesterday I watched him with Sophia at the pool and knew that he too would be okay. He is taking grant now to Hollywood Studios for a dream day of Star Wars. He is an amazing father and we are all so lucky to have him. Grant. Grant tells Ib he lives her before he goes out, he hugs me all the time, he takes care of Sophia. He and I watched the fireworks in the magic kingdom last night and it was magical as he leaned on my shoulder and gave me nose kisses. Sophia. Seriously, she is a gift from God. She is by far having e best time of anyone. “Phia’s castle! Phia’s Mickey!”. She loves it all. Doesn’t know a stranger. Hugging every character and blowing kisses. She struts in this morning in a two-piece bathing suit, sunglasses and hat and gives me a model pose. I could eat her up. My mom and Bob.. Taking whoever, wherever. Keeping my kids in their room and tending to their every needs. Don and Katherine, working behind the scenes with our concierge, lining up whatever we need, being Stuart’s rock. We are all a well oiled machine, knowing that when we leave tomorrow, the real work begins. I imagine we are days away from saying goodbye and I’m confident we will all face it together as best we can.
Thank you to everyone who has sent flowers, paid for rooms, flew us here, drove us and even sent gift cards. We haven’t had to think of anything these past couple of days besides our family and it has been a blessing. My besties have organized a trip of a lifetime and it will live in our hearts forever with the help of you all who follow our journey.
Now… Back to my sweet girl.
[6/17/12] July 17, 2012
Happy Father’s Day to everyone! I am up early this morning, taking care of the dogs and about to run out for Stuart’s favorite breakfast but wanted to take a moment to write before the day got busy. The week seems to fly by so quickly. For the first couple of days this week, Isabella seemed to be getting better every day. So good in fact that Stuart and I nervously called the oncologist as we started to second guess ourselves. We knew when we placed the call that we were like every other parent going through this situation. We were grasping onto our last straw and praying that we were seeing a miracle. It was just to crazy to watch her do crafts, want to go to the pool, go to the movies… But, it was confirmed that it is just a cruel game and we were told that we are in the “honeymoon” phase of her dying process. Honeymoon phase? I think that would be the last thing I would have called it. It feels like the absolute meanest phase we have seen to date. She wakes up in the morning, walks downstairs, eats breakfast, talks with you like nothing is going on. You have to keep reminding yourself when you look at her that you are in fact in the dying process.. Which feels so hurtful. I think we had prepared ourselves for this swift death when we returned from Disney, but instead we have this somewhat normal child to look at every day. The stress of the week has been wearing down on us and once again I feel us on edge with each other and everyone around us. I know it is just the situation that is making us this way, but it becomes hard to be around each other. Stuart and I try to be calm but our frustrations are being thrown like knives at each other. We are trying hard to live better in the moment and give each other a break, but it is so hard. The doctors told us to really try and enjoy these days because the cancer will eventually break through, and they will be gone like that. Thursday was a great day for Isabella… Friday, things turned a little. Vomiting in the morning and just really not happy through the day. For about a week now we have not had to give her any medication for breakthrough pain or vomiting.. but Friday we started back on them. Yesterday was even worse. Vomiting in the morning that just continued onto anxiety for her. We had to medicate her with stronger meds to calm her down and decrease the vomiting.. but then you feel like you are just drugging her. She slept most of the day but was anxious to take Daddy to Red Lobster that evening for a Father’s Day dinner. She mustered up the strength to put on a pretty dress and comb down her bed head. We wrapped up his gifts which were a new water bottle with her artwork on it from school and a recordable story book. The book, I must say, was my last awesome thing to do wife when it comes to Isabella. I bought this adorable book that is about how I am always thinking of you or want to be with you when are away. Very cute book but means even more when it is applied to Isabella. I worked with Ib for about an hour on Friday night, recording her reading each page. It is so priceless. She and Daddy went out to eat and she tried her very best to not be sick at dinner. But she struggled so much as she waited for him to open his gifts. They had to get dinner to go because she just wasn’t well and then minute he put her in the car, she vomited. They walked in the door with a full vomit bucket just an hour later. I cleaned her up and put her to bed, giving her meds to knock her out. I feel so awful for Stuart and I know how hard that dinner was for him. He is breaking inside and sadness and pain are words that don’t even begin to describe it. The anniversary of his Mother’s death from cancer is this week and his birthday is on the 24th. I’m sick about the fact that i know Isabella is now going downhill and I just hate to think his birthday will hold this cloud over it forever. It’s like the last slap in the face after all of his hard work to keep her alive. So unfair and undeserving. But today I will do the best I can to give him a wonderful Father’s Day. We both know that it is the last Father’s Day he will have with 3 chidren, maybe even the last Sunday breakfast with 3 children. All we can do is hold on to every last minute we can.
[6/21/12] June 21, 2012
I have sat down about four times to write in this journal but each time something pulls me away. The days seem so long and often I ask myself, what day is it? I seriously don’t know if it’s Sunday or Thursday. The majority of my days are spent in the bed with Isabella. I try to lay with her in the morning until around 4 each day. We don’t do much in the bed. Occasional meds, back rubs, small conversation. I’ll get her up and put her in the bath with me to make sure she at least feels clean every day. But with each bath, I look at this girl and can barely see my Isabella in there. Her stomach is sunken, ribs showing every bone. Her shoulder stick out like they want to punch through the skin and her spine shows each vertebrae. I can no longer carry her with my hand on her back because it just upsets me too much. Her pain comes and goes and when it comes, it seems harder to get on top of. We have increased her pain patch and the nurses are coming out tomorrow to show me how to push meds through her line. I think it’s my last step in becoming a full nurse for her. It’s what I want though. I feel like I want zero help from the medical profession going forward. It just is too personal to me at this point so I’m starting to even close them out. I know I am driving them crazy but they deal with me the best they can. I know they mean well.. but it’s just hard. We have days where the pain is so intense that she starts vomiting over and over. We wonder if things will start to turn for the worse, then the next day is quiet and she sleeps all day. One night this week she started to become disoriented and had trouble speaking.. but then cuddled up and slept through the night. It’s hard because we come to peace with things and what is going to happen, and then she walks downstairs and eats a bowl of ravioli. But just as quickly as she appears, she disappears yet again. Her counts are sky high so we aren’t needing transfusions.. which is odd because we were told to expect transfusions because the neuroblastoma and radiation will start to knock them down considerably.. But that is not happening. We think she will only make it a couple of days and then a week goes by. A horrible night followed by a day up and chatting with me about how my birthday gifts for daddy are “not fun” and she wants to get him something fun so we search the Internet together. Really??? I honestly don’t know what in the hell we are doing. Stuart is trying to stay busy with work or the house, Grant is in camp, Mom is entertaining Phia, Stuart’s Dad is helping him with whatever is bothering Stuart and Katherine is organizing my pantry. It’s honestly a very weird house right now. But, we are just taking each day for what it is.. another day with Isabella.
While we are all trying to come to peace with things, Grant is beginning to struggle. He is having moments of tears that come from just seeing a picture of them together. Nightmares, night sweats and the constant need to be right next to me, let me know that he is grieving. He misses her. He comes and gives her hugs when he leaves and constantly says, “tell Isabella I love her”. Even today he came in and sat next to the tub while Isabella and I took a bath. Just talking about whatever came in his head.. but it just felt normal to him for a minute. They talk as if nothing is going on.. he tells her that her hair is coming in good, or they talk about how library day will work next year at Marvin, what happens when people have surgery, his new Spider-man book.. whatever. He just wants to be there. I’m amazed he doesn’t mention the look of the body he sees in the water.. he notices it I’m sure. I know the key will be keeping him active when this process comes to an end. I’m looking forward to giving him the attention he deserves and getting to connect with him again. Right now the kids get me in doses of when I’m downstairs for a bit. They light up when they see me like it’s been weeks since I was there. I sit on the couch with Grant and Sophia and they both take my arms and wrap them around their bodies. It feels wonderful.
Everyone is being so amazing and patient with us. Friends check in daily and do anything they can to help. I know it is frustrating because no one knows what to do. But sometimes just taking Stuart out for a drink, having a class or wine with me in my living room or taking Grant for a couple of hours makes a big difference. We get such great cards and letters in the mail from people that are touched by Isabella. We have had articles written about us (wonderful article by Jen Plym at Charlotte Smarty Pants Click HERE to read), spreading the word on Ib and helping raise funds for her foundation. Business are having “Isabella days” and donating their profits to her cause or sending things to our house just to feel like they are making a difference. We are blown away daily at how quickly the word is spreading and we are so excited to think of all the checks we can make out to fund research, grant wishes, etc. I love hearing all the people coming forward to be a part of it all.
Otherwise, we are still hanging in as best as we can. I wish there was some handbook on how to handle this or some brochure on how this is all going to happen. We just wake up each day and do what we can to get through it. Thanks to everyone for everything you do.. we feel very supported and loved and it feels so wonderful during this hard time. Back to my baby..
[6/26/12] June 26, 2012
Emails come in and it reminds me to update caringbridge once again. Lots of wonderful emails from people who want to help. People want to bring things by that Isabella can do quietly in the house. These emails let me know that I have done a crappy job with updating you on Isabella. Unfortunately, Isabella is no longer getting out of bed. As a matter of fact, she is barely moving.. or barely awake. I know that CB could never give you a crisp enough picture of what is exactly going on here and I should do better at that. So many of you have followed her in this journey for so long and I know you are wanting to know how she is doing. Our nurse visit today told us that we are just a couple days away from her passing. Her heartbeat is slowing down but sounding different because her heart is working harder. Her oxygen is slowing down a bit too. Her breathing is slowing down so much in fact that I just stare at her. She will take a breath and then it will be so long until the next one that I find myself holding my breath until she takes one again. She sleeps most of the day and gives me small glimpses until what is in her mind. I lay with her so quiet and still and listen to the things that she says in her sleep. She asks me if I see things or tells someone to wait on Mommy. She will say Grant’s name but then it wakes her and she says that she was just dreaming. She flinches and smiles, makes gestures with her hands and squeezes my hand softly. It’s like she is talking to someone. But the occasional smile let’s me know that it is not the conversation that scares her or makes her sad. Each night Stuart and I snuggle in beside her and tell her things just in case she is not with us when we wake up. We have been told by hospice that we are lucky. She is relaxed, comfortable and not in pain. So many children pass in pain or discomfort or even worse.. scared. She seems to be at some peace. Grant misses her already. He comes in bed and wants to crawl in next to her. The other day he just snuggled beside her and scratched her back while they (he) watched a movie. She didn’t moan or cry out for him to leave. She just laid there with him quietly.. as if to give him a moment. Sophia walks around dressed in princess outfits and opens the door occasionally to say, “Bella!” but then is quickly shooed out so Ib isn’t disturbed. Behind the scenes we are making arrangements so that we are as prepared as we can be. We are once again overwhelmed by the things showing up at our door. Fruit, flowers, meals, cards, items for the kids.. amazing stuff really. I’m picturing the mounds of thank you cards that I want to write when this is all done but I’m also scared to write them because it will mean she is no longer with us. It is becoming a beautiful thing that I’m watching honestly. You think you love your kids, but this is like no love I ever knew. I feel so privileged to be hand in hand with her during this last time in her life. She is finally allowing other people to have quiet moments with her as well. It’s as if she is giving them some last gift to say thank you to them as well. Even my Mom who she adores was moaned and groaned at for some time.. but she is curled up in bed with her now receiving her gift from Isabella for all she gave up in her life. I’m so thankful that everyone who is important, gets to be a part of this in the end.
Sunday was Stuart’s birthday. Isabella found the strength inside her to come down and sing to him. Where she found the strength, I’ll never know. She gave him an entry to the NYC marathon this November 4th that will run right down 1st Avenue by Sloan-Kettering and the Ronald McDonald House of NYC. Stuart will be running on behalf of Fred’s Team which raises money for MSKCC’s Neuroblastoma research program. Stuart has lots of motivation for this run and he will amaze us all. She will be there in spirit cheering him on… and even in her passing, she is still trying to make a difference in the kids that will come behind her.
I’m at a loss for words. I love her so much.
[7/5/12] July 5, 2012
It was just six days ago that I lost her but it feels like an eternity. Moments go by and I forget that it has happened. I think that she is just out with someone. It all happened so quickly but the hours felt like an eternity. Tuesday night I got her up out of bed and put her in a warm bath with me. I knew the water would feel good to her and cleaning her would help her sleep. As she laid on top of me we tried to talk about things but when she would speak, the words didn’t make much sense and she was having trouble getting words out. I think that for the first time it made her nervous. She could hear herself and she knew it wasn’t right. Stuart helped her out of the bath and she was too weak to use the restroom or have her teeth brushed. We were supporting her completely. She curled up in bed and tried to watch “cats and dogs” with daddy but she was so exhausted. I was still giving her oral meds and pills every couple of hours so we were controlling pain, vomiting and anxiety pretty well. I remember giving her meds at 4 am that she took but when I woke at 6am, she could no longer take the meds. Stuart and I knew that morning that we had turned another corner and I started pushing all meds through her port from then on. When hospice arrived that morning, they confirmed that we had hours. Just the day before we were given a couple of days up to a week, and like that – we lost time. We began to allow people to stop in for a few minutes each and give her kisses and goodbyes. Each one was harder and harder. I just sat there and held her hand as the hours progressed. Her heartbeat was still going strong but her breathing had changed. The time between breaths was getting longer and longer as the day continued. I was able to curl up with her at moments through the day and we would nap together. It felt normal as I curled around her body and allowed myself to relax. We just laid together all day. Each time I had to get out of bed to get her iv meds together, I was scared. I knew that every moment was crucial. I remember falling asleep from midnight to 1:30 in the morning. As soon as I woke, I started to cry because I was so pissed with myself for missing that 90 minutes. She looked so different in just 90 minutes. Family took shifts with me as I tried to stay awake as best I could. Stuart caught a cat nap while my mom and I laid on each side of her. My brother sat in the chair next to us as we talked about anything to keep us awake. I would talk but watch her stomach rise. My conversation would come to a halt at times because I was waiting for a breath. I kept putting my hand over her heart to feel the pounding of it to keep me sane. By this time, her eyes were no longer closing. It made it hard to sit in front of her because they were no longer her eyes. I knew that she was gone but her body was trying to live. It was ripping my heart out that my daughter’s once beautiful face had become so painful to look at. I was able to sleep from 6-7:30 in the morning while Stuart and my sister kept watch. I knew when I woke and looked at her that it was it was time to close off our bedroom to family and have Stuart and I lay next to her. Her body temperature was dropping and her color was changing. I kept rubbing her hands, thinking that if my hands rubbed them enough, they would turn pink again… But they never did. I wish I could of sat behind her and just held her but I couldn’t. I had to sit facing her. I wanted her to know that I wasn’t afraid. I was going to experience every minute of this moment with her no matter how hard it was. I think Stuart thought she would go a couple of hours. But I knew by looking at her that it was time. Her breaths became scary.. Each one made me think it was her last. I could see the end of her line resting on the skin above her heart so I just watched it move so slightly up and down to assure me a part of her was still here. Stuart told me that I’m putting too much pressure on myself by not looking away. But I couldn’t. Her face changed. I don’t know how to describe it but it did. I knew that the next breath would be her last.. And it was. I sat there in silence.. Just holding her hand. I pushed away the end of her port and placed my hand on her chest. There was nothing. 9:50am. So many times in her life my hand was feeling her heartbeat and it wasn’t there. I just said, “Stuart.”. And we both knew it was over. I kissed her sweet face, her sweet hands and tears of pain were falling from our eyes.. Feeling like knives cutting our faces. We locked our door and knew that we owed Isabella the privacy she deserved as we got her together. I took off her port, her patches and her bandaids, freeing her from it all. Stuart carried her to the bathroom and laid her against him in the bathtub as I washed her body. We laid her down and dressed her in her favorite silk pony pjs and carried her back to our bed. We spread out her favorite blanket and put her head on her silky pillow as we wrapped her up nice and warm. I kept trying to close her eyes because I felt like it would scare Grant but they still wouldn’t close. Her color was changing quickly so I had to put some pink on her lips and cheeks just so grant wouldn’t notice her coloring. We brushed her hair and folded her hands on her chest. We let our family come in one by one and see her as we sat back, knowing we had truly done all at we could do. My mom picked up grant from camp and brought him home. We took him in to see her and he sat on my lap next to her and cried. He had lots of questions like how we knew she was dead, if she was just going to stay in our bed with us now that she wasn’t alive. So many innocent questions. Questions you never want to give the answers to. Sophia came in and crawled right up in bed with her. “Bye Belle” she said as she gave her a kiss and a hug and then off she went. The funeral home came quickly which was best. Of course the A/C unit on the second floor of our house went out over the last 24 hours of Isabella’s life so by this time in the process, our bedroom was 78 degrees and climbing. Someone told me that they were here to get her and I just kept thinking, please don’t be creepy looking. Please don’t have bad teeth or some cheap suit on with a stain on it. Why was I thinking this? Stuart carried her downstairs and I swore I wouldn’t watch as they took her. But there I was, following behind in my pajamas watching every move. They placed her on a gurney and I kissed her head and told her I loved her. I had to turn away as they put her blanket over her face. I saw the bag underneath and I knew they were going to zip it over her. I had to turn away. When I looked back, she was in the back of a minivan driving away and I wanted to scream. I knew the cremation would be in 24 hours and I couldn’t handle knowing that she was going to be somewhere without me next to her in a building with strangers. But what could I do? Or that in 24 hours it will be like her body never existed. I wish I could tell you what happened the rest of the day but I can’t. And I’m sure you are all wondering why I am sharing such intimate details. It is because I am still blown away that it happened. You know children die from cancer. But to see it is unlike anything you have ever imagined. All the notes of “thinking of you, praying for you..” or my least favorite, “RIP Isabella”.. they all seemed like things I would have said to someone but they feel so weird to hear because the don’t feel equal to the situation If everyone had to witness what Stuart and I witnessed, there would be a cure for cancer. Instead of those comments, it feels better to hear, “I ran around my house screaming and punching walls today..”, or “I thought of Isabella and gave blood today or decided to volunteer”, or “I hit up my wealthy great uncle and he gave a million dollars to neuroblastoma research.”. Those feel more appropriate after what I saw. Because however you picture a child’s life ending can’t compare to what it is really like. I’m haunted by the images of her in my mind. I can’t walk in my bedroom, in my bathroom, I can’t close my eyes without seeing her eyes. I know in time the good memories will replace these but I don’t know when that will start. How can we live in a society that allows this to happen? People are living lives and not looking behind this curtain because if they saw what I saw, they would do everything they could to prevent it from happening. People say God needed another angel. If God can make giraffes and waffles and walmarts, then why doesn’t he just MAKE another angel? Don’t take mine. I know I’m in these stages of grief.. Denial, anger, frustration, sadness. I experience a new stage every hour. We had to bolt out of town for a couple of days because I’m literally tripping over her everywhere I go. Her flip flops, her placemats, her toothbrush, her book bag.. It’s punching me in the face at every turn. I need to clear a daily path when I get home so that I can at least function.
So now here we are as a family of four in a hotel. The kids love the attention and excitement of a trip. But Stuart and I are so quiet. We are with them but not with them. To be honest, the kids are exhausting. We have been crippled by a sick child for so long that we didn’t go all day long with the kids. With healthy kids, who now have your full attention, it is non-stop. Talking, wrestling, cuddling, jumping.. It’s so different for us because one parents was always devoted to keeping things quiet for Isabella. Now that we are playing man on man defense, we are dying. While it’s great, we miss our quiet times because that is what we had for 5 years. Stuart and I crash in bed at night like we have just been with 10 kids instead of 2. It will take some getting used to. Grant tells every stranger that he has a sister that just went to heaven so we have that uncomfortable look at the pool from another parent, or a stranger just making polite conversation and asking how many kids you have or what i do for a living. It all comes back to her . Stuart and I are trying to be sensitive to one other, but at times we are like sandpaper rubbing against each other. When one of us is present in the moment, the other is with her and vise versa. We are feeling so out of place and empty. The blue skies and commotion are allowing me to not see her eyes for a minute so the trip is serving a purpose. But at night I am scared. Scared of that first dream when she visits me or I relive the moment. It only took 2 nights until I had that first dream and have had one ever since. I wake up exhausted because I’m fighting for her all night in my dreams. I don’t know when this feeling will pass or if it ever will. I’m floating along in space doing things, but in my mind I’m still rubbing her little hand, trying to bring the color back.. But the color is not coming back.
Her service is in 2 days. I have been in the front seat for almost five years now and now I want to ride in the back. I can’t make decisions or barely give an opinion. Stuart is amazing, handling every detail of the service as all my friends around me tend to things that need tending to. My closet is a graveyard of pink dresses.. Nothing seems appropriate but I’m figuring it out. Even as I type this I get the chills thinking of Saturday at 2:00 when it all starts. I’m so afraid to see everyone and have everyone see me. I have to hold it together but I’m not sure if I can. I am so broken and I feel like half of me is missing. I still just picture her a couple of months ago at the Make a Wish ball in her gorgeous fancy pink dress with a flower wreath over her head, dancing and singing and carrying her new puppy Lucy and giving hugs and kisses to everyone. How is she gone? How did this happen….