Hello all – Yes, we know it’s been awhile again since our last update. All was actually pretty quiet up until the last few weeks, so didn’t have much to report on. That all changed three weeks ago when Sally was admitted with what appeared to be an infection on the skin around her central line.

This is how it looked on Friday when Nicole brought her in.

Nicole ended up bringing her in on a Friday evening to get it checked out, which turned out to be the start of an unexpected week-long stay at Sloan Kettering. Although blood tests never confirmed an infection because it wasn’t swabbed when we arrived, doctors didn’t want to risk it and informed us we needed to switch out her line, leaving it to us whether we wanted another central line or switch to a port. After much debate, Nicole and I decided that it was time to switch Sally to a port.

In isolation, watching people walk by.

Made this sign to keep people away while our little girl napped.

As opposed to a central line which hangs off Sally’s back, the port lives under the skin on her chest and is less prone to infection. As a result, she’s able to get wet and take a bath or go into a pool. With friends surprising us with a cabana at a nearby beach club this summer in Breezy Point, we felt it would be a good quality of life move for her so she could enjoy the cabana with less risk of infection and even go in a pool for the first time.

The white portion is the port, which lives under Sally’s skin. The needle goes through the skin into the center of it and is left there while getting chemo or drawing blood.

The needle, which is attached to an IV tube.

The earliest surgery could be scheduled was the following Friday, so had to remain at MSK the entire week. Because she still tests positive for neurovirus, even though she’s had no symptoms in over a year, she had to remain confined to her room in isolation.

Sally comforting her baby while the nurses are about to come in and take her to surgery. It’s hard sitting there with her knowing she’s going to be in pain soon.

On way to surgery, she’s got the yellow gown covering the stroller because she’s on isolation.

She handled the surgery OK.  She was in a lot of pain after, not to mention she received two doses of chemo directly following that were on hold until the surgery could be completed. She rebounded nicely the next day and we were able to enjoy Memorial Day Weekend and Nicole’s birthday at the cabana. The following week we returned and had her accessed the first time. Accessing is when they stick a needle in through the skin on Sally’s chest into the port so blood can be drawn and chemo delivered, just as with her central line. We recruited Nurse Kerry to handle it as Sally really likes her, and knew she would do a great job. We put a cream on Sally’s chest an hour before that numbed it, and through distracting her were able to access her with relative ease, much to our stressed relief.

The port is the little bump below the bandage.

Nurse Kerry accessing Sally for the first time. She let out a yell when the needle went in, but was fine. Kerry is in a dress for the annual MSK prom that was taking place that day.

After that things resumed to our “normal” for a bit, but again had a scare this past weekend. Sally had her scheduled Cytarabine chemo on Thursday and Friday. We’ve noticed that she gets a fever with this two-day treatment, so were prepared to give her Tylenol to hopefully prevent it. On Friday after chemo we decided to brave the weekend traffic and cooler temperatures to head out to the beach and enjoy some pizza as a family at the cabana. Sally was pushing her stroller as she always does, but then got clingy. We took her temp and it was 101, and gave her the scheduled Tylenol. After an hour the fever didn’t go down, so decided to head home and call it in. I went to park the car and pick up some Pedialyte at the store when I got a text from Nicole to come right home. As I was heading back she called and told me that Sally spiked to 103, then 104 as she was on the phone with the hospital, and started moaning.

Since Sally was diagnosed almost two years ago, she has never had a high fever above the 101-102 range. That’s amazing considering the number of fevers she’s had from treatment. This was very worrisome, so we both decided to bring her in and leave the boys with friends and family. We rushed in, luckily hitting no traffic, and confirmed that mot only did she had a 103.5 temp, but had broken out in a rash. They quickly accessed her and began delivering IV fluids and a strong antibiotic after taking cultures. She was miserable for about 90 minutes, until they were able to give her an IV dose of Tylenol which finally brought her fever down. They then wanted to keep her for a few hours and monitor her, especially since her heart rate skyrocketed to 180, normal being closer to 100. By 4am they cleared us, and we headed home. She hovered around 100 degrees all day Saturday even with the Tylenol, but never hit the 100.3 that would have required us to bring her back in. By Sunday she was luckily back to herself.

At the hospital, you can see how red her cheeks are from the fever. Our little girl was miserable.

The rash that broke out all over her body.

Other than that, things have been quiet and we have been continuing to work hard on getting her walking. Just last week she managed to let go of the table to transition a step over to her grocery cart. She’s quick walking with a toy stroller and her stamina continues to increase, so hope her walking days are close at hand. We brought her in for a bone density exam across the street at Hospital for Special Surgery, however they expected a 2.5 year old to lay still for a long time on a moving table, which wasn’t happening with Sally, especially with a tech that didn’t seem to have experience with children. We’re not sure where to go from here, as it appears none of the local hospitals will will give her something to sedate her for the procedure.

Strolling the halls getting PT.

We have really taken advantage of the cabana, especially Nicole who through getting it set up has been able to use it as a mental escape. Sally loves it there, she pushes her stroller all over the grounds and enjoys meeting people. We’ve had a few of her followers drop by and say hello, but most people don’t know Sweet Sally Sunshine. Last week she played with a girl her age, and we realized it was the first time she had played with a non-cancer child from a family who didn’t know she has cancer. It was normal. Sally has hair and obviously has challenges as she has a feeding tube and can’t walk yet, but most strangers have no idea she has cancer as it’s not obvious like in the past. We’re sure word will spread, but it’s interesting not being “the cancer family” for the first time in two years. As we get to know people, we struggle with when/if to tell them.

Sally’s friend Kiersten raised money to buy Sally a cart and other beach supplies for the cabana.

Playing at the cabana, she gets all over the place.

Next week will be the two year mark for when Sally first got sick, before several weeks of testing and a changing diagnosis landed us in treatment mid-July of 2013. We’re not sure when treatment will end, other than it will be in August or September. That feels close yet so far away knowing a lot can still happen in that time, just look at our last few weeks. This has brought us a lot of anxiety, which we’ll share those feelings/worries in a separate post that we’re writing.

In the meantime, we are soaking up the milder weather and enjoying being out in the world again after an isolated winter.

Please keep Sally in your thoughts and prayers.

Matt

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