February 2013
August 2012 – January 2013
Natalie. Taken on August 14th just TWO days before Natalie was diagnosed.
The family. Taken on August 14th just TWO days before Natalie was diagnosed.
Hannah and Natalie. Taken on August 14th just TWO days before Natalie was diagnosed.
Taken on August 14th just TWO days before Natalie was diagnosed.
From the morning she was diagnosed. I had decided that I was taking her back to the doctors that day, but after I worked ½ the day. In the interim I took those photos before I left for work so that I could e-mail them to her pediatrician. Her skin is so yellow/gray due to her hemoglobin being so low. Here, you can see the broken blood vessels in her right eye, along with some of the petechiae sporadically around her face (hours later her eye was swollen completely shut, purple from the blood, and while in the ER she had blood tears running out of it down her face).
Shows more petechiae around her face (the one in her nose too), but more importantly shows the small bruise in her hairline above her left eye.
From day two when she had just gotten out of surgery where they placed her port (you can see the gauze just below her upper right shoulder). Note her right eye how it looks as though she was punched but the swelling had come down significantly.
Clearly the quality of these images isn’t great, but it clearly shows what all of the steroids began doing to her body. She’d need to eat SO much that her belly would completely bulge with her belly button popping out. It might seem cute to see an almost 3 year-old-old look as though she’s nine months pregnant…but this was such a HARD time as she was constantly in pain and uncomfortable because of it. She didn’t wear a shirt for a month straight as the fabric was so uncomfortable (didn’t matter how loose the top or how soft/silky the fabric).
Clearly the quality of these images isn’t great, but it clearly shows what all of the steroids began doing to her body. She’d need to eat SO much that her belly would completely bulge with her belly button popping out. It might seem cute to see an almost 3 year-old-old look as though she’s nine months pregnant…but this was such a HARD time as she was constantly in pain and uncomfortable because of it. She didn’t wear a shirt for a month straight as the fabric was so uncomfortable (didn’t matter how loose the top or how soft/silky the fabric).
Sept 8: Natalie was feeling pretty good today (although shirt is still off of course).
Sept 8: Natalie was feeling pretty good today (although shirt is still off of course). Here you can see her incision from the port surgery (upper line), and the actual port, which when it’s not scabbed and bruised appears as a small ball under her skin.
Sept 10: Another happy moment, I tended to document these way more then the unhappy ones (naturally).
Sept 10: Another happy moment, I tended to document these way more then the unhappy ones (naturally).
9/14 Clinic: For the first 10 months of treatment we went into clinic for chemo weekly (often times more then that for additional transfusions of either blood or platelets). In addition to this Natalie was also getting spinal injections of a chemo drug called Methotrexate (still gets this almost monthly), as well as having bone marrow aspirations to keep tabs on the disease. You’ll see her pink bunny A LOT in these photos. It was the love of her life before she got diagnosed and it still is today. That bunny has gone through war with her, she’s not as pink and fluffy now, but loved more than ever!
9/17/12: This was a big milestone. Before Natalie was diagnosed she wore this rainbow tutu EVERY single day to school (daycare). It didn’t matter the season, or what she was wearing underneath, but that tutu had to on as well. From the day she was diagnosed she wanted NOTHING to do with this tutu which made me so sad b/c I know she had found such joy in it prior. One day in an effort to get her off of the couch and playing I dumped all 500 of our pit balls onto the floor. Initially she had no interest, but I left them there anyway….a few hours later, without speaking a word, she went up to her room and came down the stairs wearing her skirt! Without any music or explanation she just started dancing! I immediately broke out my camera and took shots for about 5 minutes…but then stopped as I wanted to truly enjoy this moment. We didn’t talk the entire time she danced, she just did our thing and I watched with a HUGE smile on my face. The skirt was back after this, however it now became a symbol of how she felt. When she wasn’t feeling good, or when we were in the clinic or hospital she did NOT want the tutu…but when we were home and she was feeling great, she broke it out. We started referencing a good day with it being a “tutu day.”
9/24 Clinic: Today’s clinic she had another spinal tap, as well as was given the chemo drugs, Ara-C, 6MP (this one is oral), and Cytoxan. Cytoxan requires overnight fluids so we were admitted into the hospital at the end of the day.
9/24 Clinic: Today’s clinic she had another spinal tap, as well as was given the chemo drugs, Ara-C, 6MP (this one is oral), and Cytoxan. Cytoxan requires overnight fluids so we were admitted into the hospital at the end of the day.
10/8 Clinic: Another spinal + chemo drugs Vincristine (IV push) + Pegasparaginase (IV drip taking 1-2 hours).
10/8 Clinic: Another spinal + chemo drugs Vincristine (IV push) + Pegasparaginase (IV drip taking 1-2 hours).
10/11 Clinic/Transfusion: Today we went for a blood transfusion which takes almost all day between doing the CBC, waiting for results, ordering blood + waiting for it, transfusing the blood into Natalie, then waiting another hour to make sure that there are no allergic reactions.
10/14 Hannah: Again, thought I would include this just incase it’s needed. Before Natalie was diagnosed Hannah was always our “sick” kid. She’s struggled with MAJOR food allergies and horrible asthma almost her whole life. Within a week and a half I had been to the ER 3x (twice with Natalie, once with Hannah as seen in this photo). We still don’t know exactly what set off her allergic shock, but within 10mins of being home (had been at my parents for the weekend for the yard sale), Hannah started vomiting, swelling, hives breaking out ALL over her, and within minutes later was struggling to breath. Never a dull moment!
In the beginning of this journey you get a whole binder, etc. of info and rules pertaining to the next 2+ years of your child’s treatment. One is fever (when the child has a port or broviac)…if at any point there’s a fever of 101 or higher you must dial in to the on-call oncologist (can not give Tylenol) whom will determine at that point whether or not she/he will be sending you into the ER. I’d say 98% of the time we’ve gotten sent into the ER. In fact it was so often (and they warn you of this), that we always had a bag packed and by the door (again recommended by the doctors). Most times we’d get admitted up to the 5th floor where we’d stay for the next few days, but every so often if her ANC was high enough, they’d treat her with an IV of high-dose antibiotics/fluid, then send us on our way. Sometimes this was actually harder on Dan and I because at least when we were admitted we could settle in and try to sleep. When you’re solely treated in the ER then released, you’re up the whole time (well at least I was), then likely getting released in the middle of the night (approx. 1:00am in image 1300) making it all the more difficult to get through the next day of adventure.
In the beginning of this journey you get a whole binder, etc. of info and rules pertaining to the next 2+ years of your child’s treatment. One is fever (when the child has a port or broviac)…if at any point there’s a fever of 101 or higher you must dial in to the on-call oncologist (can not give Tylenol) whom will determine at that point whether or not she/he will be sending you into the ER. I’d say 98% of the time we’ve gotten sent into the ER. In fact it was so often (and they warn you of this), that we always had a bag packed and by the door (again recommended by the doctors). Most times we’d get admitted up to the 5th floor where we’d stay for the next few days, but every so often if her ANC was high enough, they’d treat her with an IV of high-dose antibiotics/fluid, then send us on our way. Sometimes this was actually harder on Dan and I because at least when we were admitted we could settle in and try to sleep. When you’re solely treated in the ER then released, you’re up the whole time (well at least I was), then likely getting released in the middle of the night (approx. 1:00am in image 1300) making it all the more difficult to get through the next day of adventure.
10/24 Hospital: I was always trying to get her out of her room (for both of our sakes)…so as long as she was feeling up to it, and the nurses were okay with us roaming the floor, we’d do exactly that. We borrowed this car from the regular peds side as Natalie always loved it, of course the challenge for me was always pushing her pole and scooting the car since she usually didn’t have the energy to scoot it all on her own.
A sleepy Natalie is getting some meds. This was always the blessing with the port (once the tube was accessed)…the nurses could do these things without Natalie ever knowing or waking. Seems ironic to see such a beautiful, innocent face all the while poison is being pushed into her (although in this particular shot it looks as though they are flushing her lines, but you get what I’m saying).
This shoot with Natalie was kind of my own milestone…it’s when I realized that I could find peace + strength through my photography, all the while educate others through Natalie’s journey, and give Natalie a gift…proof if you will, of her strength. So many people tell me that luckily she’s young so hopefully she’ll forget about everything when she’s older. While I certainly don’t want her to obsess or feel heaviness when she’s thinking about this time in her life (when she’s much older), I also feel strongly that it’s VERY important for her to remember this fight. To see the high and lows and what she was able to do. Maybe than when she’s faced with an obstacle in her life, her own story will give her the strength to push through whatever it is that she is struggling with. So with this shoot I wanted to keep the focus on her port, her lifeline in a way. This is how she gets her poisonous chemo and her life-saving transfusions.
This shoot with Natalie was kind of my own milestone…it’s when I realized that I could find peace + strength through my photography, all the while educate others through Natalie’s journey, and give Natalie a gift…proof if you will, of her strength. So many people tell me that luckily she’s young so hopefully she’ll forget about everything when she’s older. While I certainly don’t want her to obsess or feel heaviness when she’s thinking about this time in her life (when she’s much older), I also feel strongly that it’s VERY important for her to remember this fight. To see the high and lows and what she was able to do. Maybe than when she’s faced with an obstacle in her life, her own story will give her the strength to push through whatever it is that she is struggling with. So with this shoot I wanted to keep the focus on her port, her lifeline in a way. This is how she gets her poisonous chemo and her life-saving transfusions.
There were four weeks where they’d send a nurse to give Natalie her chemo at home (two weeks in a row/ two weeks off/ then two weeks again). So on a Monday we would go into clinic for a spinal tap + other chemo drugs, then for the rest of the week we would be home where the nurse would come to give her the chemo drug Ara – C. Again, I like the irony of image 3 where you see the med supplies/paperwork, than Natalie’s little hand reaching for puzzle pieces. In image 5 you’d just need to crop out the nurse’s photo. If you’d like to use this image and really would want to keep the nurse in (Mia), then I can always call her to see if it would be okay.
There were four weeks where they’d send a nurse to give Natalie her chemo at home (two weeks in a row/ two weeks off/ then two weeks again). So on a Monday we would go into clinic for a spinal tap + other chemo drugs, then for the rest of the week we would be home where the nurse would come to give her the chemo drug Ara – C. Again, I like the irony of image 3 where you see the med supplies/paperwork, than Natalie’s little hand reaching for puzzle pieces. In image 5 you’d just need to crop out the nurse’s photo. If you’d like to use this image and really would want to keep the nurse in (Mia), then I can always call her to see if it would be okay. P.S. Hannah made the sign on the table that we kept there for months “Gorsegner’s Hospital, Natalie Hannah.”
11/6 Platelets: On this day Natalie needed a platelet transfusion. In this shot you can see that the nurse is checking her vitals…you’ll also notice that Natalie is standing on her IV pole, often times this is how I got her around clinic. Not only was it good for when she didn’t feel like walking, but it was fun for her too, so she’d get a little ride to wherever it was we were going.
11/14 ER: Natalie had a fever so being she had NO ANC we were sent into the ER. We were there for a few hours where they gave her the antibiotics + fluids then sent us home. When we got home (after putting Natalie to sleep), I had decided to do a little surgery on Natalie’s doll so that she’d have a port just like Natalie.
11/15-20 Clinic/Hosp: I took Natalie into clinic the very next day (after the ER night before) b/c her fever was back/increasing + she was moaning in pain. When we got to clinic, because they couldn’t stabilize her fever coupled with the fact that she had no ANC, they had decided to admit us into the hospital where we stayed for another 4 days.
There was about 30 minutes (while still in clinic) where she sat up and played with her doll with the new port. But that was only because the pain meds that they had given her kicked in. Soon after these shots she was back to lying down. Anyway, I remember that first night in the hospital being horrible. Natalie’s fever went up to 104.5, and she was screaming that her stomach hurt as well as her entire body. They ended up giving her Zofran for her nausea and morphine for her pain. By around 3:30am she had finally stopped screaming and fell asleep. Hearing her cry for so long that she had “ouchies” was so difficult…it still is difficult a year and a half later if that happens!
12/10-13, Hosp for 2nd Metho: Because Natalie was put into the “very high-risk” category for her leukemia, part of her treatment included four courses of high-dose methotrexate which required hospitalizations each time. So we’d be in the hospital for approximately four days, then home for a week, then in the hospital for another four days, etc. During these stays she’d be more tired than normal, but for the most part she’d feel pretty good so we could actually play.
12/10-13 Hosp for 2nd Metho: Because Natalie was put into the “very high-risk” category for her leukemia, part of her treatment included four courses of high-dose methotrexate which required hospitalizations each time. So we’d be in the hospital for approximately four days, then home for a week, then in the hospital for another four days, etc. During these stays she’d be more tired than normal, but for the most part she’d feel pretty good so we could actually play. Here, Dan pushing her back to her room (after having been in the playroom). On days we were being admitted into the hospital for the high-dose methotrexate, we always started the day in the clinic while they got our room ready…this way they could get the fluids going as she needed A LOT before giving her the chemo.
12/10-13 Hosp for 2nd Metho: Because Natalie was put into the “very high-risk” category for her leukemia, part of her treatment included four courses of high-dose methotrexate which required hospitalizations each time. So we’d be in the hospital for approximately four days, then home for a week, then in the hospital for another four days, etc. During these stays she’d be more tired than normal, but for the most part she’d feel pretty good so we could actually play. In the clinic waiting room with grandmom (Dan’s mom) off to the side.
12/10-13 Hosp for 2nd Metho: Because Natalie was put into the “very high-risk” category for her leukemia, part of her treatment included four courses of high-dose methotrexate which required hospitalizations each time. So we’d be in the hospital for approximately four days, then home for a week, then in the hospital for another four days, etc. During these stays she’d be more tired than normal, but for the most part she’d feel pretty good so we could actually play. We’re still in the waiting room at clinic, Natalie’s trying on a hat to take home (basket filled behind her).
Carmen is taking Natalie’s vitals (here checking her weight).
Carmen is putting Natalie’s bracelet on.
Natalie is flushing her own “tubie” line…my girl is tough!
We usually have to wait in clinic most of the day before getting transferred to the hospital, she’s sitting in the transfusion room relaxing with a show on the ipad.
Dan, Hannah and Natalie in the playroom on the hospital floor.
Dan, Hannah and Natalie in the playroom on the hospital floor.
Hannah is putting on the glove, so official looking. Since this girl was 3-years-old she always said she wanted to be a doctor and a mommy when she grows up…I don’t doubt that she’ll do just that!
Natalie just hanging out in the room, playing on my phone. You can see the bag of Methotrexate hanging in the first image (gross yellow)…it takes 24 hours to drip through her little body.
Our new routine was Dan picking up Hannah on his way home from work (from school/daycare), stopping home to grab something for dinner, then bringing it back to the hospital. This way we could still eat together, the girls would have a little time to play/hang out, and Dan and I got to see each other too!
Natalie having a visit from Bella the therapy dog, Natalie just LOVES when Bella visits!
Taken down in the lobby of the hospital (iconic water/light wall behind Natalie)…I desperately wanted to get Natalie off of the fifth floor, so I asked the nurses if I could bring her downstairs to see the big fish tanks (in their cafeteria). Shockingly they said yes! I left the floor so quickly (I think I was afraid that they would change their minds) that I even forgot to throw Natalie’s shoes on her! Anyway, you can’t see her pole in the shot, but you can sort of see her tube connecting her (note green parts). The best part of all is that they were setting up for some sort of holiday party so once everyone saw Natalie with her pole they started showering her with goodies (huge sunglasses, tiara, boa, etc). We hung out for about 15 minutes but then her machine started to beep so we had to cut the fun short.
12/26-29 Hosp for 3rd Metho: Since Natalie’s diagnosis one of her FAVORITE things to play is doctor. The nurses always give her some real supplies to play with so she LOVES this. Note the doll in the photo, it’s the same one I made a port for…this doll came with us to every hospital stay and had everything done that Natalie had to have done. She really loved doing this and it helped us to explain procedures to her a bit.
My rock star daughter drawing her own blood!! Sad and awesome at the same time.
Natalie playing on the window sill, I think this made her feel like she was outside a bit, so if she felt well enough to get out of bed then I was happy!
…she always crashes hard!
1/6/12 Bath: I only included this b/c in image 8 you can really see how much her hair has thinned. I remember thinking that she’d lose all of her hair within the first month. While she did thin out considerably that first month…it kind of slowed down after that so I truly thought that she might be one of the very rare who actually keep most of their hair. Not that it really mattered, but I remember being surprised by this.
1/9-1/12 Hosp for 4th Metho: The irony…there’s Natalie’s favorite sweet bunny, then the tube running along side (connected to Natalie) is the methotrexate.
Again to get out of the room we’d leave the onc wing and just play in this breezeway. On the other side of the glass (a floor down) is the general waiting area for guests so often times you see big families, usually with “It’s a Girl” or “It’s a boy” balloons. She liked looking down onto these people, especially when someone would wave up to her.
February 2013 – August 2013
2/5 Clinic: Today’s chemo is Daumorubicin which is also known as the “red devil” chemo drug. It’s extremely dangerous due to the fact that it can bring on cardiomyopathy, leading to congestive heart failure. Up until this point the doctors were always how shocked at how much hair Natalie still had, but they informed me on this visit that this dosage of Daumorubicin would be the one to take the final strands out. On a separate note, at night (for sleeping) Natalie wears pull-ups, and when we’re in the hospital it sucks b/c if I don’t swap it out every two hours she’ll be completely soaked through (they give her SO many fluids she pees like crazy when we’re in the hospital). Anyway one night around 2am I was changing her as I always did when in walked one of the nurses who proceeded to scold me about putting gloves on to do that. She explained how toxic Natalie’s urine was so I needed to protect to my skin. WHAT? This stuff is being pumped into my baby and I need to put on gloves to touch the edge of a pull-up? Not happening. I refused to have Natalie not feel my skin while changing her…she can feel the rubber gloves with the nurses and doctors (even if she is sleeping). I didn’t want to become clinical to her! Image 5 is when we were leaving clinic and they took out her “tubie”…you can see where her port is…where the access her.
2/16 Self Medicating: One of the hardest things in the beginning of everything was getting Natalie to take her oral meds. Here we are 6 months into treatment and Natalie began taking them on her own with no fight or fuss. A bittersweet moment.
Once again we ended up in the hospital because of a fever combined with low counts. This was the same weekend some friends were holding a fundraiser for our family, I only left the hospital for about four hours, but it was torture knowing I was there and not at the hospital with Natalie where I belonged. As you can see in these photos she’s down to very little hair, the “red devil” certainly did its job. She was so happy to see all of us though (my mom was with her while we were gone) so we were able to get her to play a bit. I love these pics, especially the ones of Hannah and Natalie…Hannah has ALWAYS been like a mini mama to Natalie (I always have to remind her that she’s her sister), but when Natalie got diagnosed this nurture instinct kicked her into high-gear! So beautiful.
2/27 Feeling good: As I talked about above with the rainbow tutu…I had gotten she and Hannah these pink tutus for Christmas and I knew when she had one on, well than my girl was having a feel good “tutu day.”
2/27 Head Shave: Dan had decided that he wanted to shave his head for Natalie. When it came to the whole hair thing, Natalie didn’t seem to care too much. The one thing she did say to me back in the beginning (out of nowhere mind you) was “mommy, if I don’t have any hair, how am I going to be a girl?” THAT broke my heart…especially since we hadn’t even been talking about hair loss, and it’s when she still had a lot of hair so she must have been hearing us talk about it and she had been thinking about it. Of course I explained that long hair did not make her a girl…then I decided that we had to take the positive approach. We needed to let her know that losing her hair was no big deal, so I did so by my reactions. If she lost a big chunk I’d smile and say YAY, pretty soon I’m going to see that sweet face even more…your hair keeps getting in the way of it. She loved that. Anyway, this was a fun night with Dan and the girls, although I joked with him saying he didn’t shave it enough!
3/8 Double Tutu day: Not only was Natalie feeling great enough to be wearing one tutu, but she decided to put her sister’s on as well so I refer to this day as her double tutu day! My girl was feeling great so once again I broke out the camera.
3/8 Double Tutu day: Not only was Natalie feeling great enough to be wearing one tutu, but she decided to put her sister’s on as well so I refer to this day as her double tutu day! My girl was feeling great so once again I broke out the camera.
when we walk into clinic…vitals are taken. For some reason out of everything this girls goes through, she HATES being measured (standing against that wall). You can tell that she needed a transfusion, look how washed out her skin tone is…very gray.
After she had a blood transfusion, she had more chemo done at home.
Julianna + Natalie…I remember this day like it was yesterday. It was the first day that the girls REALLY bonded, and I think it was in part to Julianna giving Natalie that bald Moxie doll…ha, sometimes that’s all it takes. Hard to believe that just six months later Julianna would be gone.
I hadn’t thought to do our dollar fundraiser just yet, but I did think why not sell some of my stuff to try and raise some money for pediatric cancer. So instead of shooting everything against white…why not use the perfect model? Natalie had a BLAST dressing up in “mommy’s stuff.” Two birds, one stone…fun for my girl, money for a great cause!
Helping Natalie deal with her hair loss was telling her that I would get to see more of her sweet face with less hair. So whenever she lost chunks at a time I would just say…YAY, look at that beautiful face. It seemed to work b/c it always made her smile. That hairbrush shot is her brush and that was one sweep of her head. Natalie had never had her first haircut so in a way this was her first one….I kept the locks.
Diagnosis day, this was the scariest moment that we had had in this journey thus far. All chemo induced.
Diagnosis day, this was the scariest moment that we had had in this journey thus far. All chemo induced.
3/29 Clinic Transfusion: We were all surprised when Natalie’s came back low resulting in a transfusion as she had good energy and color. It was funny but kind of sad to see her playing with her blood tube. Most kids play with toys when they’re bored, kids sitting in a seat for a few hours while having a transfusion find fun in tubes filled with moving blood.
3/31 Easter: What a great day. We didn’t do anything or go anywhere but the girls still got all dressed up for the occasion, Natalie picked this dress out on her own. A year later and she still tries to squeeze into it, my girl loves her dresses!
3/31 Easter: What a great day. We didn’t do anything or go anywhere but the girls still got all dressed up for the occasion, Natalie picked this dress out on her own. A year later and she still tries to squeeze into it, my girl loves her dresses!
4/2 Clinic Pink Eye: When Natalie started complaining that her eye hurt, then seeing that it was bloodshot, beginning to swell, and the SAME eye as on diagnosis day, I’m not going to lie, I felt a little bit paranoid that we were dealing with a relapse. I knew in my heart that she was okay, but once your child has been diagnosed with cancer, well then the every day regular kid illnesses have you thinking it’s cancer rather then what it really is. Thankfully pinkeye is all this was, but it’s a window into a cancer parents world…nothing is how we knew it pre-cancer.
When we first got to clinic and they accessed her port per the norm in order to drawn her blood to take the CBC. My girlie is so brave…she’s even helping to draw her own blood
4/9 Julianna: Natalie’s BFF Julianna also had clinic today. Both girls blood counts came back too low for chemo, so we all were sent home for the day. This of course is bitter sweet as we’re happy to have a “free day” to do as we please, but as always it’s never a good thing to be too sick to continue with chemo. I ended up taking these shots of the girls before we left clinic and then we moved on to a local park and enjoyed the beautiful day. Julianna was ALWAYS so loving and patient with Natalie. It’s amazing that even with an eight year age gap, these two were still great buds!
4/21 Napping lots: Natalie sleeps a lot, she never use to but clearly everything exhausts her. She’ll get spurts of beautiful energy, then crash for 2-3 hours. She can even sleep until 7:00pm, then turn around and be in bed sleeping for the night by 8:00pm.
I did this to both mine and Dan’s car last September for childhood cancer awareness month (oh and to my parents car)…so this year I thought, why wait until September. So many people stop me when they see the car so it’s great exposure. In fact just yesterday (4/23), two women stopped me in the parking lot of the grocery store. One gave me (right there and then) a bag of kids toys that I could use either for a fundraiser or to give to the kids at Hackensack. The other woman was from a local news station and now she and her crew will be coming to one of our fundraisers that is happening tomorrow!
I did this to both mine and Dan’s car last September for childhood cancer awareness month (oh and to my parents car)…so this year I thought, why wait until September. So many people stop me when they see the car so it’s great exposure. In fact just yesterday (4/23), two women stopped me in the parking lot of the grocery store. One gave me (right there and then) a bag of kids toys that I could use either for a fundraiser or to give to the kids at Hackensack. The other woman was from a local news station and now she and her crew will be coming to one of our fundraisers that is happening tomorrow!
4/26 Clinic: The port was so great b/c with the numbing cream I’d rub over it prior, she really never felt the puncture of the needle, but what would upset her was the anticipation (as seen here)…and having to hold her down NEVER gets easier.
You’ll start to notice that I’m taking less clinic photos. One bringing my big pro camera with me in addition to the cooler I had to pack for Natalie + her backpack, it made carrying things difficult. But thankfully, because things were going more or less smoothly, then I didn’t see the point in taking the same shots (getting accessed, etc.) over and over, so instead I started leaving my camera behind and simply shot the occasional photo (usually to update people on FB) with my phone. Here, Natalie and I taking a break while hanging/distributing flyers for our fundraiser in our old town of Rutherford. She really enjoys doing this.
We were visiting Julianna after clinic (she was admitted into the hospital for one of her treatments similar to Natalie with the high doses of Methotrexate).
Just of silly sisterly love!
Again, not as many photos as before, we were also getting ready to move which made everything challenging, especially because at this point the Dollar Fundraiser had really taken off therefore was A LOT of work (but all good : ). This was taken at Hannah’s school…it was her 6th b-day!
Clinic
We were visiting Julianna in the PICU after Natalie had needed a blood transfusion in clinic. Do to the same chemo drug that Natalie had also had, Daunorubicin (the “red devil”), Julianna had developed cardiomyopathy and had to be on complete isolation while in the PICU. That didn’t stop us from visiting, what did the girls do? They played through the glass of course.
We were back to clinic for another spinal tap. Natalie hates these “sleepy room” days…not only b/c her back is always sore for a few days, but also because she can’t eat/drink until it’s done which usually isn’t until 11:30-noon.
7/21 The Edels: Just a week or so prior Tina and John had found out that Julianna’s cancer (Ewing Sarcoma) had relapsed which we all knew was NOT good. With that Julianna had asked Tina if they could “go visit Natalie.” So, the Edel family drove the now two hours down to our new house and we had a beautiful day together with the girls swimming, eating, singing, and dancing. This was the last day that we were all together…the last good day that the girls had with Julianna. Hannah didn’t get to see J after this, Natalie only saw her one more time while J was in the hospital, but she was really sick at that point.
7/21 The Edels: Just a week or so prior Tina and John had found out that Julianna’s cancer (Ewing Sarcoma) had relapsed which we all knew was NOT good. With that Julianna had asked Tina if they could “go visit Natalie.” So, the Edel family drove the now two hours down to our new house and we had a beautiful day together with the girls swimming, eating, singing, and dancing. This was the last day that we were all together…the last good day that the girls had with Julianna. Hannah didn’t get to see J after this, Natalie only saw her one more time while J was in the hospital, but she was really sick at that point.
There’s just an expression on Julianna’s face when she was hugging Natalie goodbye, it’s almost as if she knew that things from this point on would be much different. Same with Natalie…she does NOT give hugs out lightly, let alone hold a hug. They sat like this for at least 30 seconds…I was amazed at their hold…it was beautiful, I remember feeling my eyes well up at this sight.
7/29 Doll Port Surgery: Since Natalie was about to have her port surgically removed, I wanted to prep her in a way I knew she’d understand…but doing surgery on her doll’s port of course.
7/29 Doll Port Surgery: Since Natalie was about to have her port surgically removed, I wanted to prep her in a way I knew she’d understand…but doing surgery on her doll’s port of course. Naturally Hannah insisted on helping her sissy ; ).
Another piece of art from Hannah with a story as to why her sister is her hero…brought me to tears as no one asked her to say Natalie, she did this all on her own. I love the baldy Natalie in her drawing…wearing a tutu of course!
Port Removal
8.5.13 Girls Bounce house: Nothing to explain, just a fun day.
8.5.13 Girls Bounce house: Nothing to explain, just a fun day.
8.6.13 Haddon Heights Proclamation: This was all my mom, she made it happen then I showed up for the announcement and spoke to everyone. The idea is that if we can get more individual towns to proclaim that September is childhood cancer awareness month, then we can reach more people resulting in (down the line) proper funding for pediatric cancer research. I’m in communication with the mayor of Middletown, NJ as we speak and will hopefully be doing the same thing as well as having every school in the district recognize childhood cancer awareness month in September by holding an activity/fundraiser with the kids as well as educating the parents. Lots of good stuff.
8.6.13 Haddon Heights Proclamation: This was all my mom, she made it happen then I showed up for the announcement and spoke to everyone. The idea is that if we can get more individual towns to proclaim that September is childhood cancer awareness month, then we can reach more people resulting in (down the line) proper funding for pediatric cancer research. I’m in communication with the mayor of Middletown, NJ as we speak and will hopefully be doing the same thing as well as having every school in the district recognize childhood cancer awareness month in September by holding an activity/fundraiser with the kids as well as educating the parents. Lots of good stuff.
8.6.13 Haddon Heights Proclamation: This was all my mom, she made it happen then I showed up for the announcement and spoke to everyone. The idea is that if we can get more individual towns to proclaim that September is childhood cancer awareness month, then we can reach more people resulting in (down the line) proper funding for pediatric cancer research. I’m in communication with the mayor of Middletown, NJ as we speak and will hopefully be doing the same thing as well as having every school in the district recognize childhood cancer awareness month in September by holding an activity/fundraiser with the kids as well as educating the parents. Lots of good stuff.
8.6.13 Haddon Heights Proclamation: This was all my mom, she made it happen then I showed up for the announcement and spoke to everyone. The idea is that if we can get more individual towns to proclaim that September is childhood cancer awareness month, then we can reach more people resulting in (down the line) proper funding for pediatric cancer research. I’m in communication with the mayor of Middletown, NJ as we speak and will hopefully be doing the same thing as well as having every school in the district recognize childhood cancer awareness month in September by holding an activity/fundraiser with the kids as well as educating the parents. Lots of good stuff.
8.14.13 Girls Gardens: Just another fun day in our new town
8.4.13 Girls Super Heros: Natalie got this awesome fighter cape, mask, and cuffs from a WONDERFUL woman that follows her on FB so I wanted to do a shoot to thank her (Capes for a Cure).
8.4.13 Girls Super Heros: Natalie got this awesome fighter cape, mask, and cuffs from a WONDERFUL woman that follows her on FB so I wanted to do a shoot to thank her (Capes for a Cure).
Natalie LOVES puzzles (especially of the USA), so we used this to show people where we hadn’t gotten letters/dollars from so that we could complete the puzzle! In the end we got letters from every state (and a few different countries)!
Natalie’s port. They looked at me like I was nuts when I said I wanted to keep it, but I wanted to see (and one day want Natalie to see), how it was she received all of those transfusions, chemo, and blood withdraws. I miss her port, it was less painful for her to get accessed…it’s only once a month, but getting the IV really sucks for her.
September 2013 – April 2014
8.4.13 Girls Super Heros: Natalie got this awesome fighter cape, mask, and cuffs from a WONDERFUL woman that follows her on FB so I wanted to do a shoot to thank her (Capes for a Cure).
8.4.13 Girls Super Heros: Natalie got this awesome fighter cape, mask, and cuffs from a WONDERFUL woman that follows her on FB so I wanted to do a shoot to thank her (Capes for a Cure).
Hannah and me from her first day of First grade. New year, new school, new friends….I was VERY nervous!
Natalie in clinic…I love it b/c as I described, Natalie is so sweet and kind …but this photo shows her toughness perfectly! She doesn’t care who you are, what you’re there to do, everyone is suspect and she has NO problem saying no to you about anything. Even the child life specialists…she likes them more then she did, but she still gives them the evil eye : ). I love her edginess, I think it’s what got her through everything.
11.1-7 Natalie’s Make-a-Wish trip to Atlantis: This was our first “real” vacation as a family (outside of the Jersey shore)…first plane ride for the kids, the works and it was AMAZING!!
11.1-7 Natalie’s Make-a-Wish trip to Atlantis: This was our first “real” vacation as a family (outside of the Jersey shore)…first plane ride for the kids, the works and it was AMAZING!!
11.1-7 Natalie’s Make-a-Wish trip to Atlantis: This was our first “real” vacation as a family (outside of the Jersey shore)…first plane ride for the kids, the works and it was AMAZING!!
11.12-15: Well, we paid the price of our trip…Natalie’s counts must have been low when we were in Atlantis b/c naturally she got a bug that landed us in the ER (here), then admitted into the hospital.
This was from the last day when we were going to be discharged from the hospital. She still had her IV in but they were able to remove her connection to the IV pole which means for the first time ever she could roam around without getting twisted in tubes and dragging a big pole. It was the most beautiful almost hour because I just observed her, and she let me. We didn’t talk AT ALL, she didn’t perform for the camera (not her style anyway), she just let me shoot away while watching her do all the small things a bored child does in a hospital room.
This was from the last day when we were going to be discharged from the hospital. She still had her IV in but they were able to remove her connection to the IV pole which means for the first time ever she could roam around without getting twisted in tubes and dragging a big pole. It was the most beautiful almost hour because I just observed her, and she let me. We didn’t talk AT ALL, she didn’t perform for the camera (not her style anyway), she just let me shoot away while watching her do all the small things a bored child does in a hospital room.
This was from the last day when we were going to be discharged from the hospital. She still had her IV in but they were able to remove her connection to the IV pole which means for the first time ever she could roam around without getting twisted in tubes and dragging a big pole. It was the most beautiful almost hour because I just observed her, and she let me. We didn’t talk AT ALL, she didn’t perform for the camera (not her style anyway), she just let me shoot away while watching her do all the small things a bored child does in a hospital room.
This was from the last day when we were going to be discharged from the hospital. She still had her IV in but they were able to remove her connection to the IV pole which means for the first time ever she could roam around without getting twisted in tubes and dragging a big pole. It was the most beautiful almost hour because I just observed her, and she let me. We didn’t talk AT ALL, she didn’t perform for the camera (not her style anyway), she just let me shoot away while watching her do all the small things a bored child does in a hospital room.
Natalie was pushing her IV pole as she wanted to “take a walk” around the clinic. She looks so big in this photo. It was a “sleepy room” day which meant a spinal of methotrexate and an aspirate to make sure her fluid is still clear of leukemia.
Her IV (the nurse was wrapping it up)
Holiday card photos!
Holiday card photos!
Holiday card photos!
Holiday card photos!
Holiday card photos!
Holiday card photos!
Dena Sherwood and her beautiful family (the woman who started The Truth 365). She created this AMAZING movement that is uniting all childhood cancer people/foundations! Her son Billy is a neuroblastoma survivor…two years and still NED (no evidence of disease)!
Our family at the Arms Wide Open gala!
Me and Dena
Hannah made when her sister was having a REALLY good day and wanted to dance…I love the blue hand chandelier: ).
normally they wheel the kids into a recovery room (after their spinals), but Danny wanted to carry Natalie as he never gets to go to these appointments b/c of work.
Natalie has recently had a bad month…this photo was taken on her first GREAT day. Seeing her wear her everyday red dress and break out her guitar meant EVERYTHING to me.
My parents with their five granddaughers…the loves of their lives! My parents have been SO instrumental during this whole thing. Not just being there at a moments notice (and they live almost 2 hours away from me), but for SOOOOOOOOO many extras. I mean, where do I start. They advocate just as much as I do and hold LOTS of little fundraisers for my goal! They’ve come out of pocket for so much and never ask for anything in return. I am the luckiest “child” in the world to have these two as my parents.
Easter. We JUST adopted this 9-year-old Korean Jindo from a rescue and named her Hope!
The horse farm down the street. It’s so calm and relaxing there…we stop by at least once a week when the weather is nice. The girls always dress themselves completely so I just love the outfits.
Infinite Love For Natalie Grace 