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A Hard Week in the Life a 4-Year-Old With Cancer

Courtesy of the Feltwell Family

A little over a year ago I became aware of the the story of Danny Feltwell, a little Margate boy suffering from a rare form of childhood cancer.

Danny’s father, D.J., is a single parent who left his job to care for Danny, and commuting and staying with him for chemotherapy at A.I DuPont Hospital.in Delaware.

If you read this blog, you saw updates on young Danny’s progress during 2012.  You came to know what a fighter the Feltwell boys are, Dan and Danny, and, what a courageous struggle they are undergoing to allow Danny to have a normal, happy childhood.

Danny is 4 now and goes to the same school as my daughters, when he’s strong enough and not receiving treatment. It’s been awhile since I’ve offered an update on Danny’s condition, but I’ve continued to follow Dan Feltwell’s intelligent and heartfelt posts about his son’s disease.

Lately, the news about Danny has not been good, as he experiences adverse reactions to the medicines being used for his treatment.

Here are three updates from this week via Dan Feltwell which will give you a better understanding of Danny’s condition and the courage and love father and son continue to display.  It is my great honor to know them and I’m sure you will join me in hoping for better news soon concerning Danny Feltwell’s health.

D.J. Feltwell would love to receive your well wishes for his son, Danny.  You can leave them in the comments section below.

Tuesday, Feb. 19th:

Just eight days ago Danny received a 25% dose of Vincristine (Chemotherapy). We had to spend four days in the Hospital because of the side effects from last months 25% dose of Vincristine (Chemotherapy) starting the Friday before last. Danny`s little body can no longer tolerate even a 50% dose of Vincristine and I fear that 25% is too hard on him now.

I just spent the last 45 minutes comforting my son, as best as I could, while he cried in pain. Danny has had Peripheral Neuropathy (Nerve pain) return in his feet. This is heart wrenching to watch and not be able to take it away. Danny has also been having difficulty with not being able to digest solid foods nor is he able to pass anything through his digestive tract, this is caused by Vincristine and is a form of Autonomic Neuropathy (Dis-Motility). This happens because of the lack of or weakening of the involuntary muscle movements throughout his digestive tract. These side effects from Vincristine are Neurological side effects which effect nerve endings and /or interrupts the signal from the brain.

For Danny`s pain I cannot give Danny Motrin because it depletes his blood platelet count, I cannot give him Tylenol because we do not want to “mask” a fever and I cannot give him any of the stronger pain meds because they cause constipation (Danny already cannot make a bowel movement).

I just got off the phone with one of Danny`s Oncologists and we have increased some of his meds, the ones for his side effects. Now I sit here with 2 different Chemotherapeutic Drugs in front of me, Mercaptopurine and Methotrexate, and I hate doing this to my son. I have to give these drugs to my son, without question my son needs to have them. I watch so helpless, so full of sorrow that some times I want to go outside and scream, scream as loud as I can “Why don`t you just give me Danny`s Disease?”

There are sometimes a large cost for giving our Children a Cure, we have to make my son hurt in order to make him well. I hate every bit of Childhood Cancer but I refuse to stop Fighting, I refuse to stop.

Friday, Feb. 22nd:

Danny is now sleeping again, comfortable in my bed and I shall join him once I mix his 2 Chemotherapies and give them to him. Tonight I will not move him from my bed but rather sleep with him, hold him and let him know just how much his Daddy loves him.

During this week I watch as my son started to have severe side effects from the Chemotherapy (Vincristine) he received on Feb. 11th. I wrote a Note this past Tuesday called Difficult Days and Nights explaining some of what my son endures. With that last dose of Vincristine I fear my son may have been hurt in a way that brings me to tears, rips my heart into pieces.
Today I reached out to one of Danny`s Oncologists to let her know what I see and how uncomfortable I am about them. She went directly to Danny`s Primary Oncologist, who is the Chief of Oncology here at AI duPont Hosp. and he wanted me to bring Danny right in. Danny is having a very severe problem right now, his bowels (his intestinal tract and colon) have been paralyzed. Danny has had problems with Vincristine and developed what is called Autonomic Neuropathy, but now the toxicity of this Chemotherapeutic Drug may have really hurt my beautiful little boy. We just don`t know for sure how bad it is, but what we do know is that Danny does have a paralysis of his digestive tract. I will not know any more for a few days.
I do not know what else to say, I hurt for my son. I love him more than life itself I sit with him day after day night after night. I comfort him, I care for him and I give him all of my love and devotion. But I hurt very deeply for my beautiful little boy……..

Saturday, Feb. 23rd:

Danny is sleeping comfortably now but it has been a rough day for him so far. All of Danny`s medications are being given through IV infusion. Danny needs to have complete bowel rest for quite some time. IV nutrients or TPN will be discussed later this afternoon with GI and Surgery is coming by also. There is another problem with Danny having his Bowels and Digestive Tract paralyzed….all of the oral Chemotherapy that Danny has taken in the last two months is sitting inside his Intestinal Tract and it needs to be removed before it can cause much more harm.

Danny and I will stay here at AI duPont for quite some time, I am not sure for how long nor do I really care how long our stay may be, as long as my beautiful little boy gets well and I can bring him home. Now… the Doctors will only say we will have to stay for at least a month or more.

We have stopped all of Danny`s Chemotherapy and if we can ever start again, which is doubtful, he will never be able to receive Vincristine (the Chemotherapeutic Drug that caused Danny`s paralysis). So I not only worry a great deal about the Paralysis throughout Danny`s Digestive tract, I worry about my sons Cancer and the probability of a recurrence. Danny has missed 8 months of Treatment and many doses of Chemotherapy, a Bone Marrow Transplant would be my sons only available option. I know I should not think of this or even entertain a thought such as this, but I cannot help it, how can I not think of this.

I pray that my beautiful little boy will overcome this adversity and come home with me to play, laugh and live a full and wonderful life.

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