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Updates

January 11, 2024

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It is with the heaviest of heart that i announce that Carly was determined to meet the clinical criteria for brain death January 10, 2024 at 12:21pm . While this is not how we wanted her story to end, we are so very blrssed thst she graced us with her presence this lifetime. Forever among the stars. ?????????



December 29, 2023

Watch Video Update


Today, extensive testing will conducted to determine if Carlene is still here with us. Until today, she has defied the odds and shown us that she is still fighting. I’m calling on the collective conscious effort to bring healing to Carly to be intentional with the energy you send. Thank you all for your support on this journey.

Thank you to all of those who have donated. The travel expenses to be here with Carlene as much as possible while maintaining a presence for the other children are immeasurable. Uber rides are $60-90 one way, depending on teh time of day. Driving expenses, including gas, tolls, and parking, are no more cost-effective. Every dollar counts and is greatly appreciated.

More than that, the collective consciousness's power keeps Carly here. I believe in teh power of prayer, the power of God, and the power of positivity. We need all that healing energy sent to Carly more than ever today. Thank you so much for your attention and participation.


Find links to follow or show support at www.coinsforcarly.com

November 26, 2023

Carlene has been in the PICU at Memorial Sloan Kettering Cancer Center and has been unresponsive since November 19th. Please see the video update for further details.


Watch YouTube Video




September 28, 2023

It has been a long while since we updated this platform. Since the June update, Carly has completed proton radiation. Unfortunately, her post-radiation scans show that her cancer has returned and metastasized to her central nervous fluid. On September 15, 2023, Carly was formally diagnosed with Leptomeningeal disease. The treatment options for this reoccurrence are limited, and the prognosis is grim.


Carly is currently an inpatient at Children's Hospital Orange County, receiving treatments to get her back to a solid baseline to give her oncologists at Memorial Sloan Kettering Cancer Center the best chance at providing additional treatment options. In addition to conventional therapies, I have onboarded several holistic therapies to complement and assist with helping her to remain stable. 




Our biggest challenge at this time is Carly's total loss of mobility. She cannot move her body from the neck down. We must retrofit our home and purchase supportive equipment to help transport and support her during this challenging journey. I do not know what the future holds, but Carly is still here and fighting. We will not lose hope or cease in our efforts to save her life.


For the latest video and picture updates, please visit her social media using the handle @coinsforcarly or by clicking the links below. Thank you all for your continued support. We need it now more than ever.


Facebook

Instagram

TikTok

YouTube

June 17, 2023

Carlene is a real life super hero. The way she navigates the challenges of a Stage IV metastatic cancer diagnosis never ceases to amaze everyone on her care team. There has been no shortage of challenges over since our last update. Here are the highlights:


  • March 16 - Received Intra Arterial Chemotherapy (Ophthalmic Artery Chemosurgery)
  • March 19 - Developed an infection in the central line catheter in her chest
  • March 19 to May 2 - remained inpatient at Memorial Sloan Kettering Cancer Center
  • May 3 to May 8 - completed her Make-A-Wish trip to Disney world
  • May 7 - Carly celebrates her 3rd birthday
  • May 9 - MRI of brain and orbits shows the tumor has not grown since starting IA chemo
  • May 31 - Decision made to stop IA chemo and start proton radiation


The treatment plan going forward requires proton radiation to be given Monday - Friday for five weeks. There are a few barriers to the treatments being completed. Chemotherapy, infections, and blood clots damaged her veins and arteries and restricted her blood flow. It is challenging to find IV access. It would be impossible to place an IV daily to administer anesthesia before the radiation treatments. She needs a central line to administer medication.



March 11, 2023



As we know, Carly’s post-transplant MRI scans show her tumor is growing.

Let’s do a recap:

- I suspected Carly had retinoblastoma when I saw the “white” in her eye at 3 months.
?????
- She was diagnosed formally, in Jamaica, at 5 months
?????
- We started holistic treatment in November 2020.
?????
- She received a clear MRI with no evidence of disease (also confirmed at MSK) in June 2021.
?????
- In February 2022, I started noticing symptoms of a possible relapse.
?????
- In April 2022, relapse was confirmed at UWI Hospital in Jamaica.
?????
- On May 2, 2022, Carly arrived in NYC at MSK for emergency surgery. Tumor and left eye removed. Chemotherapy started.
?????
- September 2022, chemotherapy finished and stem cells harvested for transplant
?????
- In October 2022, high-dose chemotherapy started, and the transplant was completed on 10/18
?????
- Carly had 100 days of isolation after her transplant and on Feb 20, 2023, she had a post-transplant MRI that showed new tumor growth in her left eye socket.

- Carly will have ophthalmic artery chemosurgery on Thursday, March 16, 2023.

As Carly embarks on another round of treatment to address the new tumor growth, thank you for your continued support to help Carly's family navigate the spiritual, financial, and emotional burdens a stage IV cancer diagnosis causes. You may visit www.coinsforcarly.com for support links and updates. 

March 11, 2023



As we know, Carly’s post-transplant MRI scans show her tumor is growing.

Let’s do a recap:

- I suspected Carly had retinoblastoma when I saw the “white” in her eye at 3 months.
?????
- She was diagnosed formally, in Jamaica, at 5 months
?????
- We started holistic treatment in November 2020.
?????
- She received a clear MRI with no evidence of disease (also confirmed at MSK) in June 2021.
?????
- In February 2022, I started noticing symptoms of a possible relapse.
?????
- In April 2022, relapse was confirmed at UWI Hospital in Jamaica.
?????
- On May 2, 2022, Carly arrived in NYC at MSK for emergency surgery. Tumor and left eye removed. Chemotherapy started.
?????
- September 2022, chemotherapy finished and stem cells harvested for transplant
?????
- In October 2022, high-dose chemotherapy started, and the transplant was completed on 10/18
?????
- Carly had 100 days of isolation after her transplant and on Feb 20, 2023, she had a post-transplant MRI that showed new tumor growth in her left eye socket.

- Carly will have ophthalmic artery chemosurgery on Thursday, March 16, 2023.

As Carly embarks on another round of treatment to address the new tumor growth, thank you for your continued support to help Carly's family navigate the spiritual, financial, and emotional burdens a stage IV cancer diagnosis causes. You may visit www.coinsforcarly.com for support links and updates. 

March 11, 2023



As we know, Carly’s post-transplant MRI scans show her tumor is growing.

Let’s do a recap:

- I suspected Carly had retinoblastoma when I saw the “white” in her eye at 3 months.
?????
- She was diagnosed formally, in Jamaica, at 5 months
?????
- We started holistic treatment in November 2020.
?????
- She received a clear MRI with no evidence of disease (also confirmed at MSK) in June 2021.
?????
- In February 2022, I started noticing symptoms of a possible relapse.
?????
- In April 2022, relapse was confirmed at UWI Hospital in Jamaica.
?????
- On May 2, 2022, Carly arrived in NYC at MSK for emergency surgery. Tumor and left eye removed. Chemotherapy started.
?????
- September 2022, chemotherapy finished and stem cells harvested for transplant
?????
- In October 2022, high-dose chemotherapy started, and the transplant was completed on 10/18
?????
- Carly had 100 days of isolation after her transplant and on Feb 20, 2023, she had a post-transplant MRI that showed new tumor growth in her left eye socket.

- Carly will have ophthalmic artery chemosurgery on Thursday, March 16, 2023.

As Carly embarks on another round of treatment to address the new tumor growth, thank you for your continued support to help Carly's family navigate the spiritual, financial, and emotional burdens a stage IV cancer diagnosis causes. You may visit www.coinsforcarly.com for support links and updates. 

February 22, 2023

*Watch Youtube Video Update Here*


Carlene's post transplant scans show a 2cm mass growing in the left orbit where the previous tumor and left eye were removed. All of the doctors are puzzled at how this could happen so fast after a bone marrow transplant and in the same location. The video update gives additional information. 


This is a devastating blow for our family. We have determined that our family will have to relocate to NYC indefinitely to see Carly through this next phase of treatment. As Carly's sole parent here, I am not only a member of her care team, but also her full time caregiver. Life is as challenging presently as I have ever known it.


Thank you for your prayers, donations and support. We need it now more than ever. 

www.coinsforcarly.com



February 01, 2023

Giving Eternal Thanks 


Carlene has been blessed with many angels along this journey. Perhaps, the most important of those is a group of powerful women. These women, a cohort we will call them, ensured that Carly had a safe place to lay her head while she was facing the most difficult part of treatment.


When we landed in Manhattan, I was not prepared for how incredibly expensive the cost of living was here. These women supported Carly and sponsored her housing costs which averaged $10,000 monthly. These angels stepped in when our resources for housing ran out and we will be forever grateful. 


Carlene’s condition, before now, made exploring the option of temporary shelter impossible. However, it is now absolutely necessary. We appreciate the support of all those who have donated to the housing fundraiser. We are still a long way from our goal to raise the funds for moving costs. 


Our family transitioned into temporary shelter housing yesterday. Despite this challenge, we give thanks for the blessings. The biggest blessing is that Carly is alive. Our family has sacrificed everything for Carly to receive care at Memorial Sloan Kettering Cancer Center and we would do it all over again because she is still here. 


www.coinsforcarly.com



January 25, 2023

Carly traveled to Memorial-Sloan Kettering Cancer Center for emergency surgery on May 2, 2022, and has not been able to return home. The house her family was renting, the only home Carly has known, was recently sold and now she doesn’t have a home to go back to. 


Carly has had surgery to remove a tumor and her left eye, chemotherapy, and a bone marrow transplant. Not knowing how long treatment would last or being able to prepare properly for this long of a stay has left the family in a very difficult position. 


The current AirBNB she is living in was rented with the payment sponsored from Nov. 1 - Jan 31. This generous donation was made so that Carly would have a secure location to complete her post-transplant isolation. Extending the lease would require a payment of $9,500 monthly, which is unsustainable for the family. 


The family has been referred to a homeless shelter as the only other option. Carly cannot go into shared housing because of her health status. She is not cleared from isolation post bone marrow transplant. Her immune system has not fully recovered. She currently has the central line in her chest and the feeding tube. She needs to be in a sterile environment. 


Carly is expected to be in NYC until the end of 2023. An unfurnished apartment is about $5000 monthly. The cost to move in includes a security deposit, the first month, AND a broker fee that is equal to the rent. It also would require a minimal amount of everything that is necessary to make a home run. 


Please consider a $1 donation to help the family with the required deposit and furnishings for an apartment near the hospital. You can text HOME4CARLY to (202) 858-1233 to donate from your phone. You can find all other donation links and information at www.coinsforcarly.com. 


Please help share this campaign

January 18, 2023


GoFundMe


Carly has been blessed with tremendous support through her battle with Stage 4 Metastatic Retinoblastoma. Beginning November 1, 2022, a generous group of sponsors has covered the expense for the apartment where she is currently completing the 100 days of required isolation post bone marrow transplant. The current lease expires on January 31, 2023. Carly's family is in need of donations or sponsorship to specifically support the cost to take over the lease at the current apartment for the duration of the required isolation period. 


Total Estimated Cost: $28,750 USD


Any and all assistance is greatly appreciated. Donations are accepted on all platforms listed above. Donations made through the Kiona Foundation on this platform are tax deductible as allowed by law.


Tax Deductible Donation


Thank you for your continued support! 



January 18, 2023



From the desk of Dr. Lakisha aka Dr. Mom:
Carlene was fitted for a left socket prosthesis to replace her enucleated eye. Unfortunately, the tissue protruding since surgery made it difficult to attain a proper fit. I was called into the operating room to assess the situation. I made the decision to move forward for two reasons:
1. Carly will need to learn to use a prosthetic eye for the remainder of her life. She will have to learn to install, remove, and clean it. Although I will not use this version daily because of the fit, I plan to use it as a tool to help her become accustomed to her new normal.
2. I hope that the pressure from the prosthesis will help further decrease the inflammation in the protruding tissue and encourage it to stay in place so the next version will be a better fit.
The eyes grow over time, so Carly will be fit for a new prosthetic eye yearly.

November 21, 2022


Carlene has been discharged after being inpatient for 31 days to complete the stem cell harvest transplant process. She is currently 33 days post-transplant. She is now working on the 100 days of isolation outpatient to give her white blood cells the opportunity to grow new bone marrow and for her immune system to gain full function. We visit the clinic twice weekly for lab tests and transfusions if necessary. Keeping Carly occupied while in isolation is a challenge, but we are taking it in stride. 




Last week's clinic visits included an MRI scan to assess any potential tumor activity, post-transplant. There are a few spots in the bone around the left orbit where the tumor and eye were removed. Based on the metastasis in the bone, the transplant doctor informed us that Carlene is considered to be in "partial" remission at this time. In our meeting with the neuro-oncology team, Dr. Dunkel expressed that the results of the MRI scan will determine what, if any, additional treatment will be necessary.


Find links to follow Carlene’s journey or show your support at www.linktr.ee/coinsforcarly or on all social media with the handle @coinsforcarly. This week's social media updates include new pictures and videos on Instagram, Facebook, and TikTok.

 


We have come a long way, but still have a ways to go yet. Thank you for all of the gifts, donations, and continued support.

October 10, 2022

It has been a long while since the last update. We have had many challenges and setbacks. Fortunately, we are finally beginning the process of the bone marrow transplant. This procedure will hopefully eradicate cancer in Carly's body once and for all. This is the most invasive portion of treatment with the most risks and side effects. The best way to follow the journey is on the Coins for Carly social media pages. I will attempt to send out email updates as often as possible. The newest video update was uploaded today and can be found on FaceBook, Instagram, TikTok, and YouTube. Links to all of Carlene's social media pages can be found on LinkTree (www.linktr.ee/coinsforcarly)


Watch Video Update


Thank you for all of your prayers, well wishes, and continued support!



September 15, 2022



Carlene will begin the final stages of her treatment which will include very high dose chemotherapy and a bone marrow transplant. The side effects and recovery in this portion of treatment will be very taxing on her little body. 

.

In preparation for this next step, MSKCC

has a department that handles blood and platelet donations. Carly will have a 30 day hospital stay for administration of treatment and recovery. She will require multiple transfusions of both blood and platelets during this time. 

.

If you are in the local area, please consider making a donation on Carly’s behalf. Thank you in advance for your consideration and your continued support. 

.

Find links to follow Carlene’s journey or show your support at www.linktr.ee/coinsforcarly or on all social media with the handle @coinsforcarly. Email updates are accessible at www.coinsforcarly.com 



August 19, 2022


Since the last update on August 9th, many new developments have occurred. We now know that the pneumonia that Carlene has is from the staph infection. It has basically infiltrated her entire lungs. The staph infection also traveled through the leukapheresis catheter into her carotid artery and heart valves. This has also created blood clots that trapped the infection. Carlene is very weak from days of not eating and her body is working hard to recover. She is able to sit up independently but standing and walking are still a struggle.




On August 17, after 19 days in the hospital, Carly was discharged. Her outpatient care includes six weeks of antibiotics and six weeks of blood thinners to help the blood clots not to spread to her lungs or other arteries. We had to return to the hospital yesterday to test the level of the blood thinner in her system and we learned that she has low platelets, which can be very dangerous when on blood thinning medication. Her new PICC line is also looking like it needs attention. Hopefully, it's not serious and only requires a cleaning and a new dressing.




Carlene is a complicated case. There are additional updates on her social media pages. Links can be found on her LinkTree. A longer update will be posted as a YouTube video on her channel later this week. There are so many developments and things change daily. Let's pray that today's visit will include a dressing change for the PICC line, a platelet transfusion, and Carly getting to LEAVE without being admitted. 




Thank you for your continued support

www.coinsforcarly.com

August 09, 2022



Watch Video Update


Carlene has to do a CT scan to help determine if there are any additional sources of infection as she is still spiking a fever and needing medication to control them around the clock. 


She is making strides to recover from all of the recent challenges, but the doctors are really worried about her current condition. The findings from the CT scan show more infection that was previously recorded on the chest X-ray, echocardiogram and heart.


Carlene is struggling. We need all the prayers and well wishes we can get right now. Find links Carlene’s journey through treatment for state 4 metastatic retinoblastoma at www.linktr.ee/coinsforcarly or on social media with the handle @coinsforcarly. 


Thank You for Your Support! 

www.coinsforcarly.com

August 05, 2022

Carlene is moving into a new phase of treatment and has faced many challenges. Our family is very grateful for all of the support we have received. The new challenges have created a wave of new expenses. 


Please consider making a tax deductible donation or creating a fundraising team to share with your friends, neighbors or coworkers to help support the Coins for Carly campaign. Team fundraising information can be found here: Team Carlene




We have come a long way but we have a long way to go. Carlene is scheduled to start stem cell harvesting from her bone marrow starting August 17th. We are praying she will be stable enough to tolerate the collection that will happen every day for seven days. 


These stem cells will be used for her bone marrow transplant that is tentatively scheduled for September 22. The month of September is recognized as National Childhood Cancer Awareness month. 




Please consider sharing the Coins for Carly campaign in your networks to help Carlene continue the fight against stage 4 metastatic retinoblastoma. Easy access and shareable links can also be found here: Coins for Carly on LinkTree

August 04, 2022




Besides the staph infection from the leukapheresis catheter, the side effects from chemotherapy and the positive covid test (again), Carly also has pneumonia. 




In addition to hearing loss and nerve damage, another side effect of the Cisplatin chemo is lung damage, and a specific type of rapidly progressing pneumonia. The down side is the fact that lung damage is also a side effect of a covid diagnosis.




Carlene has needed to have her fever medically managed around the clock. She has been burning through platelets and has had 8 transfusions since being admitted last Thursday. She has also required blood transfusions and now nebulizer treatments to support her lungs. 




Today we had an echocardiogram and ultrasound to assess if the infection from the catheter is present in her heart valves because that is where the catheter was tunneled. We were informed by infectious disease that the nature of her infection will require a minimum of 4 weeks of IV antibiotics. 




She still hasn’t been eating. Today marks 10 days since she’s taken food by mouth. These are the basic points of her current condition. I could elaborate in many other ways about the specifics, but I’ll save that for a more in-depth update when there is more definitive information available. 




Carlene is struggling. We need all the prayers and well wishes we can get right now. Find links Carlene’s journey through treatment for stage 4, metastatic retinoblastoma at www.linktr.ee/coinsforcarly or on social media with the handle @coinsforcarly. Email updates are accessible at www.coinsforcarly.com 


July 29, 2022



Watch Video Update


Another day, another setback. Carlene has been running a low grade fever since she was discharged from chemo. When we saw ophthalmology on Wednesday, they were concerned, but not overly. 


In addition to the low grade fever, the site where they placed her leukapheresis catheter was starting to bleed profusely.  She was also having neurological side effects from the last round of chemo. 


We learned that not only is the catheter site infected, but she is also testing positive for Covid. This means either it never completely cleared from the July 3rd diagnosis, or she caught it in the hospital, again. 


The catheter that’s used for her treatments, drawing labs, administering medication and would have been used to harvest her stems cells and infuse the bone marrow transplant will have to now be removed. This is a huge setback. 


Carlene is struggling. We need all the prayers and well wishes we can get right now. Links for updates and social media info can be found at linktr.ee/coinsforcarly or with the handle @coinsforcarly. Thank you for your continued support. ????


#childrencantfightcanceralone #jointhemovement #coinsforcarly #carlenejanae


www.coinsforcarly.com


July 24, 2022



***Watch Video Update***


There are so many challenges that come with a cancer diagnosis. So many risks that affect the patient outside of just the cancer treatment itself. In this video, I talk about the devices that are used to draw labs and administer medications.

.

Carlene has had four surgeries for these devices. The first was the medi port, which became infected and has to be removed. Carlene developed a very serious staph infection which lead to sepsis and required 28 days of antibiotics to clear. 

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The port was followed by two PICC lines, both of which developed a leak. We learned, after the second leak, that this line would not be sufficient for the next step in her treatment which is the stem cell harvest and bone marrow transplant. 

.

This week (7/21/22), she had what we hope to be the last device placed. It’s a central veinous catheter. It was placed directly under the healed medi port site. This device will allow for labs to be drawn, the remainder of the two chemotherapy regimens to be administered, her stem cells to be harvested and also the bone marrow transplant. 

.

We are praying this is the last surgery for these devices and that she does not develop another infection. The challenge is, the day the device is placed, is the day chemotherapy is administered. After chemo, she has no immune system and as the site is healing, it’s susceptible for infection.

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Follow Carlene’s journey at www.coinsforcarly.com or @coinsforcarly on social media platforms.


Thank you for your continued support. 

July 13, 2022


It has been almost a full month since the last update and it has been eventful and full of challenges. Much of the time has been spent in the hospital. Carlene was also diagnosed with covid while she was inpatient and had another surgery to have her PICC line replaced due to a leak. She finally completed her 28-day antibiotic regimen and completed her second cycle of chemotherapy.

 

The primary neuro-oncology team presented the final treatment schedule and we learned that the complete protocol requires us to be in New York until sometime in November. Originally, we were given the authorization to potentially visit home in Jamaica at the end of July. However, with all the complications including infections, Covid, broken central lines, and necessary, we have determined that a visit home is not in Carlene’s best interest.

 

We are faced with the reality that we must stay here in New York until the full protocol is finished. There are too many risks of having complications while traveling. This is devastating news for Carlene’s siblings and father as our family has not been together since late April. To further complicate matters, Carlene’s father is unable to obtain an emergency medical visa to visit her in the United States while she is in treatment.

 

These new developments further complicate matters as we are still in need of permanent housing for the duration of our stay, which is now substantially longer than originally expected. We are forever grateful to the Coins for Carly campaign's supporters who have helped us get this far. It is because of your support and generosity that Carlene can get the best care possible to help her survive this stage 4 cancer diagnosis.

 

The following is the remainder of the treatment schedule, barring no more severe complications:

 

July 14 – Vincristine (Chemotherapy Infusion) and possible blood/platelet transfusion

 

July 15 – Bone Marrow aspiration and biopsy

 

July 18 – Bone Scan with Nuclear Medicine and follow up with neuro-oncology team

 

July 19 – MRI Scan and meeting to discuss scan results

 

July 28 – Cycle 3 – Chemotherapy protocol 

 

-Stem Cell Harvest from Bone Marrow – TBD

 

August 4–24 - more tests, mid-cycle vincristine transfusions, hopefully, no complications and delays

 

August 25 – Cycle 4 – Chemotherapy protocol

September 5-21 – more tests (MRI, bone scan, bone marrow biopsy), meetings with the transplant team, and a large dose of chemotherapy to wipe out bone marrow and immune system to prepare for transplant. Hopefully no more complications

 

September 22 – admission for stem cell transplant – 30 days inpatient in hospital for monitoring and prevention of transplant rejection, HOPEFULLY, NO COMPLICATIONS!

 

After 30 days in the hospital post-transplant, the discharge plan depends on how Carlene responds to the transplant. Once she is discharged from the hospital, she will be required to be in protective isolation for a minimum of 100 days because she will have no immune system and will be very susceptible to infection or other complications. 

 

Depending on her response to the transplant, we MAY be able to spend the protective isolation time back home in Jamaica. We are really hoping and praying for this because otherwise, we will have to stay here in New York. That would mean it would be almost a calendar year for us to be away from home and our family. 

 

We have come a long way, but we have a very long way to go.

Thank you for your continued support.


www.coinsforcarly.com

June 18, 2022


Carlene was discharged from the hospital this week. Her morale was declining rapidly, and discharge was a very important step to preserving her mental and emotional health. To make the discharge possible, she had to have another surgery to place a PICC line in her right arm to receive the antibiotics that are required to be administered 24 hours daily. Carlene is required to be on a 28-day antibiotic regimen to combat the serious blood infection that was a result of chemotherapy weakening her immune system.


This update gives an overview of all the procedures that are required to be performed daily at the hotel. It is a very candid video and a glimpse into the daily life of Carly. The antibiotics and supplies were an additional expense as outpatient prescriptions cannot be added to our hospital bill and are not covered under our current financial plan. As you all know, all of Carly's medical and living expenses are paid out of pocket by our family with no insurance reimbursement.


Watch Video Update


It is through the generous donations of all the Coins for Carly supporters that we can help to supplement the enormous financial burden that a cancer diagnosis creates. We are so very thankful for the blessings that your support gives to assist Carly with fighting stage 4 metastatic retinoblastoma. Each and every one of you is an integral part of helping to save her life and words cannot express our level of gratitude. 



Thank you for your continued support!

www.coinsforcarly.com



June 11, 2022


It has been a week of ups and downs with this infection. When it seemed to be clearing up, it reared its ugly head again. We have been admitted to the hospital for a week now. To further complicate things, one of the leads on the new temporary line tested positive for infection. We were worried that she would need to have the temporary line removed. This would prove to be a huge problem because she does not have any good veins to access for a peripheral IV. She would need several IV lines to administer all of the antibiotics and fluids required to manage this systemic infection. 


Thankfully, at this point, they were able to save the new temporary line and clear the infection. We have received three negative culture tests, which means that she may be discharged this week if the culture labs remain negative. She received a dose of VinCRIStine (chemotherapy) this week, which will place her back on schedule for her chemotherapy regimen. The team decided to skip the dose she missed to maintain the treatment timeline. 


Carlene lost all of her hair in one night! It was very shocking to watch her pull all of it out. The surgery site for the enucleation of her left eye and removal of the tumor continues to heal. We have a long way to go for the site to be ready for a prosthetic eye. The picture below is a very candid photo of her current condition. All things considered, she is fighting with all of her might and winning the small battles in an effort to win the war!



One of the conditions of her being released from the hospital this week is that she receives antibiotic IV infusions, 24 hours daily. The antibiotic regimen for the type of blood infection Carly has requires constant infusion for 28 consecutive days. We are currently on day six. She will be discharged with a pump, antibiotics, and fluids. The administration of these items would be the obligation of the family. The medical equipment provider sends a nurse upon discharge to educate the family on proper protocol but is not responsible for administration. 


As direct pay clients, it is the responsibility of the family to purchase the prescriptions and supplies prior to discharge as they are provided by a third-party equipment supplier. This is another example of the financial strain that a cancer diagnosis ensues. We are currently waiting to get a final estimate on the exact cost, but have been informed that we can expect it to be upwards of $2500 for the equipment, prescriptions, and onsite education with the nurse. Administering the protocol while residing at a hotel will prove to be a challenge, but the entire experience has been filled with challenges.


Thank you all for your continued support. All of the emotional, spiritual, psychological, financial, and physical burdens that Carly and our family currently have to bare are made easier by the outpouring of love and support we receive daily.


www.coinsforcarly.com



June 06, 2022


Carlene has had a rough few days. We are both exhausted so this update is a video link.

Thank you all for your continued support.


Video Update - June 6, 2022


www.coinsforcarly.com


June 03, 2022


This past week post-chemotherapy has been filled with ups and downs. Carlene has started to experience many of the symptoms commonly associated with chemotherapy. We are working to manage them with both conventional and alternative/complementary modalities. The most challenging is the management of nausea and helping her want to eat and keep food down. She is trying very hard to cope and we are really proud of her.  




Unfortunately, we are also starting to see the first signs of hair loss. This particular chemotherapy regimen will definitely result in total loss of hair for Carly. Another unfortunate side effect is that her white blood cell count, as of yesterday, is basically at zero. She has neutropenia and is susceptible to infection. This basically equates to zero immune function. We are using nutritional and herbal remedies to enhance her immune function. 




Because of the low WBC counts and suppressed immune function, Carly was unable to receive her scheduled chemotherapy infusion yesterday. We will try again tomorrow to avoid having a severe lapse in the scheduled cycle. We thank all of you for your continued prayers, well wishes, and support. This is an uphill battle that we are committed to winning. Carlene is a strong and courageous soul and the love and support from this community are felt by her and our entire family.


www.coinsforcarly.com

May 27, 2022


Watch: Video Greeting from Carlene


Carlene started chemotherapy in the early morning hours on May 26. Her chemotherapy regimen consists of VinCRIStine, CISplatin, Cyclophosphamide, and Etoposide. She receives them over a three-day period while admitted to the hospital. She has to receive this regemin every three weeks for four cycles.

That's three days of chemo and one day of fluids every three weeks for 4 cycles. Due to the nature of therapy and the possibility of side effects, it is necessary for Carlene to stay very close to the hospital. We are working on finding accommodations in the closest proximity to live for the next four months, minimum. 

The chemotherapy she is receiving is very invasive and comes with many possible complications. She had to receive a blood transfusion today as her hemoglobin was low at only the halfway point through the first cycle. Overall, she is tolerating chemotherapy well and is receiving the best possible care from the staff here at Memorial Sloan Kettering Cancer Center. Thank you for all of your continued prayers, well wishes, and support. 

May 24, 2022

Carlene has had more than a few events happen since the last update. She is currently in a PET scan to assess how far the cancer has spread. Yesterday's MRI scan noted that cancer has spread to the bones around her eye socket and behind the eye socket. The progression is causing the interior tissue in the left eye (where the tumor and eye were removed) to protrude forward substantially. It also drives the bones at the back of the eye to press into her brain. You can see the interior tissue already pushing forward in her update from May 14. The progression to date is exacerbated substantially. Photos of the progression are in the attached video and may be viewed at your discretion as the images are sensitive. 


Two days following surgery, I noted a lesion (you can see it circled in the video) above her eyebrow at the surgery site. She has developed several other lesions around her hairline. The MRI scans yesterday show that cancer has seemed to spread to those areas as well. Cancer is basically invading the bones in her skull around the eyes. When Dr. Abramson called yesterday to discuss the findings from the MRI, he expressed how astonished he was with the rate of growth of this cancer. He stated that he has never seen anything like it in his career that spans over 40 years.


In light of the current change in events, there is a severe sense of urgency around deciding what should be done with treatment. One thing is certain, we MUST stop this cancer from spreading immediately. The problem is we really are still in the dark about what type of cancer this is exactly. The pathology from the tumor slides suggests that it is retinoblastoma although the tumor is not following any known patterns of that disease. The bone marrow biopsy shows there is definitely a spread of cancer in her bone marrow. The lab results of the lumbar puncture show no malignant cancer cells in her spinal fluid. 


Our conventional treatment options include chemotherapy and radiation. The radiation should be local to the bones around the eye and the eye socket itself, without affecting the brain (at least I hope). 


Graphic Photo Warning - Cancer Progression Video


********** UPDATE TO THE UPDATE **********


While I was typing this update as Carlene was receiving her PET scan, I was notified that she was waking up from anesthesia. I was then asked to meet with the Oncology, Neurology and Oncology teams for a meeting. Carlene has received a stage 4 cancer diagnosis. She will have surgery at 6am tomorrow to have a medi-port implanted which attaches through the jugular vein and feeds into a central artery in her heart.


They will admit her immediately after that surgery and use that port to administer chemo therapy for the next three days. She will be on chemotherapy for the next 4 months. Radiation, at this point, is no longer a viable option. At the end of four cycles, they will harvest her stem cells and wipe out all of her bone marrow with different and very high dose chemo cocktail and then do a complete stem cell replacement. We have to live here in NYC until it’s done.


This step is absolutely necessary to stop the rapid spread that is happening right now. We have to take immediate action to save her life. Carlene could really use all of the prayers and positive energy she can get as she starts this battle tomorrow. The chemotherapy cocktail they will start her with is very invasive and with many side effects. Carlene was also gifted some alternative medicine from an organic farm. She will begin complementary herbal therapy in conjunction with chemotherapy starting tomorrow.



We can use you continued donation support more than ever. Please consider sharing Coins for Carly with your networks to raise awareness. In addition to donations for medical expenses, we would appreciate sponsors for housing and transportation in New York City. All donations to Coins for Carly are tax deductible as allowed by law. Thank you for supporting Carlene during her battle.


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May 16, 2022



Carlene successfully completed her lumbar puncture and bone marrow aspiration procedures today. Both tests were done to assess the presence of cancer cells outside of the ocular area where the tumor and left eye were removed. If these tests are positive, the amount, duration, and aggressiveness of the approach to treatment will be determined. We are still awaiting the pathology tests from the tumor itself. Once all of the test results are in, we will hopefully have a better picture of the type of cancer we are dealing with and an idea of how to approach treatment.


Thank you for your continued support!

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May 14, 2022

Carlene had a fever on Thursday that prevented her from having the lumbar puncture and bone marrow aspiration procedures completed. The anesthesiologist declined to proceed out of a heightened level of caution. Fortunately, her condition has remained stable since Friday with no other fever. The procedures have been rescheduled for Monday, May 16 at 8 am, est. We are manifesting a stable condition through the weekend so that the procedures may be performed successfully. 


Once we receive the pathology results from the tumor and the lab results from the lumbar puncture and bone marrow aspiration, we will hopefully have a clear picture of what her current condition is and be able to plan for the future. Unfortunately, we are in a holding pattern until we receive the results from these tests. The most we can do is help to reduce the swelling from her surgery site and keep her bandages clean to avoid any infection.


                                        


Carlene does not prefer the bandage change activity. She is a great participant even though she does not enjoy participating. Creating a sterile space to do bandage changes in a hotel room is not the easiest, however, we make it work the best we can. Healing is a slow process. The firm bandage that Dr. Abramson taught us to apply is aiding in reducing the swelling and encouraging the internal tissue to remain in place and hopefully retract under the eyelid eventually. 


Thank you for your continued support.

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May 11, 2022



Carlene has developed a fever of 102.5 as of today. The swelling at the surgery site has increased substantially. She was seen by Dr. Abramson today and a more secure, firm bandage was applied to the surgery site in an effort to control the swelling. Dr. Abramson informed us that when the optic nerve is severed, there is sometimes a leak of cerebral fluid into the eye cavity. He also informed us that the type of swelling that Carlene is experiencing is very rare and only seen, maybe, once a year in that office where hundreds of enucleations are performed annually.


Everything about Carlene and her condition is rare and does not follow any normal pathology or protocol. The spinal tap and bone marrow aspiration was scheduled for tomorrow (5/12), however, with the development of this fever the risks of being placed under anesthesia increased significantly. She was administered a dose of acetaminophen in the office. If the fever breaks and does not spike again overnight, there is a small possibility that the procedure will be performed. If the fever returns, however, we will have to try for another day.


Living in a hotel in New York City is insanely expensive as are the costs of food and transportation here. We were hoping to have this procedure done and return home over the weekend. Carlene's siblings are very worried about her and miss her dearly as well. Maintaining the stability of her recovery outpatient, as opposed to being admitted to the hospital is a rollercoaster of emotion and not an easy task. The level of concern is heightened and attention to detail of even the slightest changes in her disposition is critical in identifying possible complications and being able to act quickly to avoid a serious decline in her delicate condition. 


We are manifesting stability in her body temperature so that her procedures that are scheduled for tomorrow may be performed with no risk to her health and safety. Thank you all for your continued support.


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May 10, 2022



The surgery was very smooth. Dr. Abramson said that it was less complicated than he anticipated. He also reported that the mass growing behind the eye was more significant (larger in size) than the eye itself. In our follow-up appointment today (5/10), we learned that the diagnosis is still unclear, but the blood vessels and muscles in her eye were intertwined with the tumor. For this reason, everything was removed, including the eye itself. The enucleation was a success in the respect that all of the tumor that was visible to the eye was removed. Unfortunately, due to a scheduling conflict, the spinal tap and bone marrow biopsy was not completed at the time of surgery. These procedures are especially important to discern if there are any cancer cells located in any other part of her body and will gauge the level of severity and aggressiveness needed for treatment. Hopefully, we can have those completed this week. 




Thank you all again for your continued support. 

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May 09, 2022



I met with Dr. Abramson this morning and he is just as baffled today as before. We are still none the wiser about what this tumor actually is. It may be retinoblastoma, it may be teratoma or it may be something else entirely. The pathology, as I mentioned before, does not follow any pattern of known retinoblastoma cases. Our hope is that with the enucleation of her left eye and pathology tests, we can discern what we are actually dealing with.


He reiterated this morning that this is the first step of many. No other decisions can be made until after the surgery today and the receipt of the pathology reports. The typical turnaround time for pathology results is 3 weeks. Dr. Abramson spoke with the laboratory and they are going to attempt to have results back to us within 10 days' time. I pray that those results reveal the origin of this tumor and may give us a path forward. 


Dr. Abramson, along with I, are worried about the level of potential complications with this surgery. The rapid progression of this tumor creates additional challenges with removing it. There is nothing textbook about this process. What I do know is that Dr. Abramson has performed thousands of eye surgeries and has experienced many variations of tumor severity in his career. Still, NONE has EVER presented like Carlene. He confirmed that today. I am confident, however, that she is in the BEST hands possible and I must take solace in that.


Thank you again for your continued support. Let's pray that Dr. Abramson's hands are steady and guided and that the tumor gives little struggle. 


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May 05, 2022

Thank you for your continued support. Please see the video update links below for the most up-to-date information on Carlene. 


Recent Live Video Update with Carlene's Mom


Live Video with Tah and Kole Whitty

 

April 29, 2022

Carlene has an emergency surgery appointment confirmed for Wednesday, 4 May 2022. That is three days before her second birthday. The cost estimate to cover all fees and services is $32,254.98 and must be paid prior to her appointment on Wednesday. This is a herculean task and we NEED a miracle to make this happen. Carlene needs this desperately. Any and all donations are greatly appreciated. At this point, every dollar helps!


All consulting physicians agree that Sloan is the best solution for her at this point. They are all at a loss on pinpointing a diagnosis and do not exactly known what we are dealing with at this time. The way the condition is progressing does not follow any know patterns for eye tumors. We explored getting arrangements and a visa to be seen in Cuba, but the turnaround time is three weeks to a month. She does not have that must time to spare. Her condition is increasing in severity daily. 


          

Carlene 21 April 2022                    Carlene 29 April 2022


All donations are tax-deductible as allowed by law. Corporate sponsorships are also welcomed and tax-deductible. Please help us to help Carlene. Thank you in advance for your support.


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April 27, 2022

Carlene has had a couple of very full weeks filled with many evaluations. She was evaluated by Dr. Hernandez at the Diagnostics & Eye Clinic here in Jamaica. Dr. Hernandez is from Cuba and he made a referral to the Instituto De Oftalmologia Ramon Pando in Havana, Cuba. We are currently in the process of working with the Cuban Embassy to secure travel clearance and a visa to get her evaluated there.


Dr. Abramson at Memorial Sloan Kettering Cancer Center in New York was able to receive the most recent MRI Images and review the radiologist there. He would like to evaluate Carlene in early May. Dr. Abramson has been practicing and researching eye cancers for over 40 years. Carlene had an opportunity to be evaluated by him last year and I am very eager to get back to get his opinion. 


Yesterday, 26 April, Carlene had another evaluation at the University of the West Indies Hospital eye clinic with Dr. Mowatt. That is the picture with this post. She was able to confirm that cancer has not spread to her right eye and that spread to the brain, at this point, is very unlikely. Unfortunately, the hospital here isn't equipped to care for Carlene in the way that is medically necessary. However, the connection has been made between the doctors here and abroad so a care team is in place locally to handle any emergencies, should they arise. Progress! 

April 17, 2022

Current Fundraising Initiative



On April 14, 2022, Carlene had updated MRI imaging done to assess the current status of her condition. There has been a significant progression in the size of the mass in her eye. Currently, we are awaiting an update from the radiologist on their written findings. The updated images have been sent to her doctors at the University of West Indies in Jamaica, where she currently resides, and also to both Memorial Sloan Kettering Cancer Center and Diagnostics & Eye Health Center in Havana, Cuba. 


We are currently working with the top specialists that treat retinoblastoma and other eye cancers to determine the best course of action to preserve Carlene's eye and vision while eradicating tumorous growth. Carlene is in need of several diagnostic and also genetic tests to determine the exact type of tumor and her predisposition for developing other cancers in the immediate or long-term future. 


The cost of expenses incurred by Carlene's family to date is in excess of $40,000 USD. It is anticipated that cost of the remainder of the diagnostic tests will be in excess of $100,000 USD. All donations from this campaign will be directed towards these medical facilities and necessary diagnostic tests.