Your Questions Answered

•What is Reef's diagnosis?

Reef was diagnosed with high risk Infant A.L.L. (acute lymphoblastic leukemia) at the age of 5 months and in 2014 diagnosed with squamous cell carcinoma of his head and face.

He also has severe GVHD

 

•What is GVHD?

Graft versus host disease.   Where the new bone marrow sees the body as foreign, and fights against it.

 

•How does GVHD of Reef's eyes affect him?

He is unable to form tears and never will be able to.   Dry eyes are extremely painful and feel like sand in your eyes.   Reef has had his tear ducts surgically plugged to save any moisture in his eyes.   His eyes have to be hydrated every hour.  They are also extremely light sensitive.

 

•What medicine does Reef take?

            Ranitidine- reflux medication

            Vitamin D- vitamin supplement

            Cal-Quick-Calcium supplement

            Phenobarbital- anti seizure medication

            Hydrocortisone- Steroid for GVHD

            Acyclovir- prophylactic antibiotic

            Fluconazole - Prophylactic anti-fungal antibiotic 

            Bactrim- prophylactic antibiotic

            Cephalexin- prophylactic antibiotic

            Restasis eye ointment-cyclosporin eye drops

            Cloroxin-antibiotic eye ointment

            FML-steroid eye ointment

            Refresh eye drops-lubricant eye drops

            Refresh eye gel-lubricant eye gel

            Dyclofonac cream-Chemo cream for Reef’s head

            Medihoney cream-healing ointment for Reef’s head

            Flonase spray- nasal spray for allergies

            Aveeno colloidal oats bath twice a day for his skin

            Aquaphor cream applied twice per day to entire body for his skin

 

•Why did Reef develop squamous cell carcinoma?

Sun exposure (which was minimal) and two of the medications he was on to keep his GVHD under control.

 

•What is the prognosis for Reef's squamous cell carcinoma?

Reef will most likely have this for the rest of his life and will have to be checked regularly for new lesions that will require chemo application.

 

•Is Reef considered cured from leukemia?

Reef is in remission from leukemia but  he has been diagnosed with a secondary cancer and will probably have to live with that for the rest of his life, being closely watched and treated as new lesions appear. I don’t believe that one can ever claim a cure as relapse is always a possibility. 

 

•Why is Reef not allowed in the sun?

Because this will most definitely aggravate his skin cancer and encourage new lesions to form.

 

•What will happen when they wean him off the steroids completely?

We pray that his GVHD will not flare up again as this could present a huge problem.  It will however encourage growth, he will hopefully lose his "moon face" and his immune system will strengthen.

 

•Will his GVHD flare up again?

There is always a possibility of this happening especially once he is weaned off the steroids.  His skin and eyes are the areas worst affected by the GVHD.

 

•Why does Reef look the way he does?  (moon face, skin)?

Reef's moon face is due to the steroids he is on.   The dry appearance of his skin is due to the GVHD which tends to thin and stretch the skin so tight that it causes contractures, much like a burn victim.

 

•What can be done for his GVHD eyes long term?

As he gets older there are "Boston" lenses that can be inserted that trap moisture in the eyes,  but until then  he will need hourly hydration of both eyes.

 

•Will he ever grow hair again?

No. Apparently, most of his hair follicles have been irreparably damaged by the GVHD. He does grow a little on the back and sides but it is patchy.

 

•Will he grow?

Hopefully he will grow now that he is being better nourished, but should he not,  they will consider growth hormone.  He will no doubt never reach his full height potential.

 

•What can they do to open his hands?

At the moment they are trying to stretch the skin on his fingers with prostheses.

 

•Will skin grafts help?

•Skin grafting will not work for Reef as he does not heal properly and this could make matters worse for him.

 

•Why can Reef not speak?

That is something no one can answer.  Suggestions have been :  trauma,  long use of NG tube feeding, GVHD of his mouth and tongue. He is also hearing impaired from the GVHD and is said to hear everything as though spoken underwater

 

•Can’t he learn sign language?

As he is unable to open his hands signing would be impossible for him, although he has adapted for himself some of the signs normally used.

 

•Can his brain heal from the damage incurred?

We are hopeful that the latest MRI will show resorption of previous brain bleeds and no seizure activity.   The human brain is an incredible organ and where damage has been incurred, different parts of the brain can be taught to take over these functions.

 

•Will he ever have normal movement in his joints?

That is doubtful, unless medical science finds a way of skin grafting that will ensure more elasticity of his skin.  Physiotherapy does however help with movement.

 

•Will he one day be able to father children?

Apparently not.  BMT patients are left infertile.

 

•What damage has treatment done to his body and what is his life expectancy?

The damage from treatment is enormous and affects almost his whole body.  We remain hopeful though that healing will take place.   As to his life expectancy, it is said that childhood cancer survivors do have a shortened life expectancy,  but Reef has proved doctors wrong on so many occasions, we pray he will continue to do so.

 

•Why was he isolated for so long?

Years of steroid use to keep his GVHD under control wiped out his immune system, so keeping him germ and infection free was his best option.

 

•How does he cope at school?

Reef has an aide who is of huge help to him.  He is being taught to use his speech machine to communicate which will help tremendously.  He seems to enjoy school and having wonderful understanding staff members is invaluable.

 

•How does he cope with being called ugly names?

Not being able to speak, it is hard to judge how this affects him,  but he is a bright little boy and I am sure it hurts.

 

•How does he communicate?

He has a very small vocabulary and manages to make himself understood most times.  It takes a little while to learn to understand him.  Mostly he asks Mom, Dad or Payten to explain his needs.

 

If you have any more questions that we haven't answered here, please feel free to post it on Reef's Facebook pages or email us directly and we will answer

 

 

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You can make a donation from anywhere in the world via Paypal  

Ryan's direct Paypal Address is ryan.carneson@stu.aii.edu

 

Reef’s Trust fund in RSA:

Account Name : RDJ Carneson

Bank : Standard Bank

Branch : Northcliff

Branch Code : 006305

Account number : 008417059

Swift Code : SBZAZAJJ

(For International Donations)

 

South Africans: 

Donate once off by SMS by smsing "Reef" to 38771 at a cost of R10!

 

Subscribe for R20 per month - SMS "Reef" to 31222 and follow the sms prompts

 

You can also donate via GoFundMe

www.gofundme.com/savebabyreef

 

 

 

 

 

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