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Penelope's Healing Journey

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Hi everyone,

I am setting up this page for my sweet six -year old niece, Penelope. 

Please read below for information and the story regarding Penelope's Healing Journey . 

A lot of kind souls have reached out to ask what they can do to help, and we felt this would be a great way to help support the Macaluso family, as well as keeping you all updated on P's healing journey. 

Penelope is tough and strong in all ways, and everybody just adores this little girl.  It will be a journey for sure, but a journey filled with love, health and happiness. 

Thank you for all of your love and well wishes..as you know in times like these extra support of all kinds are needed and appreciated more than words can ever express!  

*Any financial help that is not needed will be donated to the children's hospital *

WE LOVE YOU P.... YOU WILL ROCK THIS!!!! 


If you would like to donate, you can do so directly through this GoFundMe page.

The below story is from the Macaluso's Caring Bridge Page dated 6/21/20
(you can sign up for that here for updates on Penelope)


As you probably know by now, Penelope was diagnosed this Wednesday with leukemia. It is the ALL type, which is the most common in children and, thankfully, the most curable.

At this point, she’s doing well. This morning she had a procedure where they drew bone marrow, put in a port, and performed a spinal tap. She’ll start her first round of chemotherapy later today.

She’s a little groggy from the anesthesia and had a bit of a rough night last night with aches and pains and not sleeping great, but overall she’s doing really well. They expect we’ll be here in the hospital until Thursday. 

Looking ahead they expect the next six months to be intense with chemo and other meds, we’ll have to come here once per week for a while for chemo. They said in total it will probably be 2 1/2 years of medicines. She’ll be at home for school at least the first half of the year and we will need to be careful with her immune system but said she will for the most part be very much her active self. 

The hospital and team here are excellent and they are very confident that she will be just fine. I’ll keep you all posted.

In case you’re wondering how we got here, I’ll share a little more information. Since we’ve been home in early March, she had a few fevers that came and went. The first one or two I didn’t think much of it, thought maybe just residual stuff from school a few weeks prior and she wasn’t complaining. But then one of them came with pain in her groin/abdomen. I scheduled a telehealth visit, they had us drive in a urine sample, and assumed it was a kidney/bladder/urinary tract infection. This was on a Friday and the results wouldn’t come back until that Monday so they started her on an antibiotic just to be safe.

Then on Monday that test came back negative, but they thought it could’ve been an error in the test and said to keep going with the antibiotic. Eventually the fever went away, but the pain moved a bit to her side, so I scheduled another telehealth. At that point they thought it was a possible kidney stone and said to wait it out for a bit and give Motrin. 

The pain and the fever went away, so we laid low, but she started to look pale/yellow to me, and I started to feel in my gut that something wasn’t right. Another fever came, this time with bad joint pain in her wrists and ankles, so I scheduled another telehealth and asked for labs bc I thought maybe it was Lymes. 

They did labs on Tuesday and said they’d call in about a week, but her doc called me the very next day and said to go straight to Levine Children’s Hospital emergency center. She said she was “severely anemic,” her red blood cells and platelets were off, and said she needed to have an ultrasound on her abdomen to look for bleeding. I took her right away and they diagnosed her that night. 

As unexpected and scary as this situation is, we feel very hopeful that she will be cured and we know she is in great hands here. This is obviously not where we wanted to be, and to have this news and all this information delivered by doctors in masks where you can’t even fully read their facial expressions has been really hard and strange, as well as dealing with our own emotions under masks (both literally and figuratively while with P). Our heads are spinning and we’ve gotten quite the education over the past few days, and it’s only the beginning. But again, we are incredibly thankful that there is so much hope.

We’re also so grateful that this little girl is so tough, so funny, and so stinking smart. She makes the nurses laugh, she wheels around her IV, and she even knows what buttons to hit when it beeps (she reaches over with her free hand while playing video games with the other). She literally danced through her blood transfusion, and I will never ever get the image out of my head of her jumping around to Queen’s “Don’t Stop Me Now” with the Just Dance game on, still with the IV, and the nurses coming in and just laughing. She will have ups and downs, we know, but she is a force, this kid, and SHE is making US strong. 

We’re so very thankful for all of your love, messages, and support, and are going to continue to lean on that as we move through this journey. Thanks so much for offering help; we don’t know right now what we need, but as things come up we promise we will ask. It’s going to be a long journey, but we will be okay. Please keep sending love, prayers, and good vibes our way. 

"Courage Comes In All Sizes"-Anonymous


Here is Penelope's favorite buddy , RABBIT always supporting her <3

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Donations 

  • Jon Barbieri
    • $100 
    • 2 yrs
  • Anonymous
    • $100 
    • 4 yrs
  • Tina Salvatore
    • $50 
    • 4 yrs
  • Susan MINGIONE
    • $50 
    • 4 yrs
  • Anonymous
    • $50 
    • 4 yrs
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Fundraising team: Macaluso/Salvatore (2)

Lisa Salvatore
Organizer
Thornwood, NY
Greg Macaluso
Beneficiary
Kristen Soni
Team member

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