It's taken awhile before I could write this post. I hope I do these children justice.
MD Anderson Cancer Center in Houston is a leading center if not THE leading center for the treatment of all forms of cancer. There they have a Children's Cancer Hospital for the treatment of childhood cancers. Anyone can go there; and while your physician can refer you, they also have a process of "self referral" as well.
My experience with these children has to do with the Proton Therapy Center where my husband Terry was treated. Many children are treated using proton beam technology. In fact, it appears to be the preferred method particularly with brain tumors.
Children with brain tumors? I kept thinking this is all a mistake. Children should not have brain tumors, but they do. They have all kinds of cancer; and as unfair as it is, they and their parents are faced with many decisions the rest of us cannot even comprehend.
The proton beam system of radiation is different from the "regular" type of radiation called photon. Proton vs. photon. I am not a medical person and I am relaying this as I understand it. While we were there, the doctors and physicists had many informational lectures to explain to us what was happening with the treatments. Photon is like a regular x-ray only much stronger. As you might expect, there is a lot of area that is radiated with such a method. As a result, there is often a lot of tissue and cell damage to areas surrounding a tumor that could result in other problems in an individual, particularly if the area treated was the brain. Eye tumors cannot be treated with such radiation without risking the patient's eyesight. Also, with photon radiation, most of the radiation is released at the point shortly after it enters the body and less gets to the actual tumor. So more radiation must be given in order for it to effect the tumor.
Proton beam radiation isolates an individual proton which is then accelerated and at a precise point is directed to the tumor in the individual patient. Each patient's treatment has been precisely configured so that the "beam" enters the patient's body and travels to the tumor where it releases the bulk of its energy. So the photon releases most of its energy when it enters the body, the proton beam releases most of its energy when it is stopped at the tumor. The proton beam will stop at that point and delivers very little if any radiation past the tumor. The photon radiation does not stop, so it continues to release radiation as it passes through the tumor.
The physics behind the proton beam is why this treatment is desired for childrens' tumors. The radiation can be directed and confined as much to the tumor itself as is possible, reducing the damage to cells and tissues surrounding the tumor. In children who are continuing to grow, this means that other functions of the body controlled by the brain, particularly growth, will be less impacted by the radiation.
Because children are active and not likely to stay totally immobile during their brief treatment (which lasts seconds), it is necessary to anesthetize these children. And they have daily treatments, so most have a temporary line placed in their chest. One mother told me that on Mondays, they put in a tube and keep it taped in place. They remove it on Friday and place it again on the following Monday. That way they are only "stuck" once a week. The parents are given lidocane to use to numb the area before the Monday "stick." A mesh mask is made to place over their head to hold them firmly in position during the treatment. Since they are anesthetized, the children have their treatments in the morning because they cannot eat or drink beforehand.
The parents bring their children in for their appointment. Now you might think these kids would kick and scream and fight these treatments. That is where the doctors, nurses, and therapists come in. I believe every one of these children are loved dearly by the people who treat them. The therapists come out into the waiting room and search out their patient. They greet them, talk with them, play briefly with them (sometimes getting down on the floor with them) and when the time is right, they say, "Are you ready to go back?" Then they pick them up and carry them back. The children, I am told, get to push the buttons on the machines and you never hear any unhappiness from any child. The parents all tell me the children love their caregivers.
Sometimes the "beam is down." No one likes to hear that. It means a delay and sometimes a reschedule. The children get first dibbs on the beam. . . that is understood. If they have to wait, a certified child care professional comes out with a box of stuff to keep the children entertained. Now, these kids already have play areas in the building, including something for every age. . . toys, books, riding toys (one boy rides a big wheel back to his treatment daily), Wii, computer games, etc. But when this lady comes out, the kids all flock to her like she's the Pied Piper and she takes them all under her loving wings and occupies their time till their treatment.
I'm not sure how many treatments these children have. It all depends on the type of tumor and how extensive it is. In many cases, the tumor has been surgically removed and they are treating the area around where the tumor was. One little girl with whom I became aquainted had 22 treatments total.
These children are all ages. But most of the children I saw were under 5, probably under 3. Our last day I saw a Dad holding his infant child, probably not more than 6 months. The baby was cancer bald with a horseshoe shaped scar on his head and many tubes trailing. One child was older and he gonged out the same day Terry did. When I spoke to him, he smiled and turned to his grandfather who spoke English to me. I believe he may have been from Netherlands and they were all flying home that day. . . Mom, Dad, Grandma, Grandpa, sister, and him. He was very excited and except for being cancer bald, did not look ill. The proton beam does not cause illness, but fatigue is a common side effect.
Several patients were still in diapers. One little girl talked very little. She looked to be about three. She did a lot of whimpering. She was not loud, but I found out that she had a brain tumor surgically removed, then had 6 months of chemo, and now was having radiation. She was going through a lot of depression. A 3-year old, with cancer and depression.
Many children were mobile, some were infants, barely walking. Others were in wheel chairs. One was brought over on a gurney from the Children's Hospital. One young boy was almost bigger than his mother, yet she or his father carried him every day. Once I saw him walk. Obviously his was a brain tumor, he gate was distorted and his limbs flailed wildly as he held his head strangely to one side. But he was happy to walk that day!
The families of these children were amazing. Never did I see anyone feeling sorry for themselves or their children. I'm sure that happened, but they had an enormous support group around them, both in the staff and each other and were willing to talk about their illnesses to those of us there for treatment as well. The little girl above was usually with her parents and a grandparent and brother. Many times it was just one parent, but sometimes it would be both. One father would sit with his arm around his wife and his little girl playing between them while their son was being treated. He would have a rosary in his hand praying. As children would be brought out following their treatment, they had to stay for 30 minutes till the effect of the anesthesia wore off. Parents could be seen cradling their precious children in their arms and whispering to them.
I started praying for what I call the "Children of Cancer." I continue to pray daily for them. And I pray that my own grandson and future grandchildren will never have to experience such an insidious disease. A disease which is no respecter of age or gender. Please pray for the Children of Cancer and pray for a cure.
Dale
Monday, April 11, 2011
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2 comments:
You've composed a beautiful tribute to the "children of cancer" sis. I know I will start praying for them, and the finding of a cure also. Now, I will go and get those tissues! Love ya, Nit
Thanks, Nita. It was sad to see those children, but they were all happy to be there getting state-of-the-art treatment.
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