Dear Empire State Building, Part 10

Dear Empire State Building,

I am taking the time to write this letter because my son, Grant was diagnosed with Non-Hodgkins Lymphoma at age four and is now a cancer survivor! See, that very first sentence sounds so cheerful and happy. It doesn’t make you think about the fact he went through hell to get where he is today & continues to struggle due to late side effects from chemotherapy (poison) being injected not only into his veins, but his spinal fluid every other week for almost three years, and full cranial (brain) radiation. Each time they injected the high dose chemo into his spinal fluid he had to be sedated. Read that sentence again. Yes, for almost three years my sweet boy had to be sedated every other week to have poison injected into his spinal fluid. This doesn’t include the biopsy, port being put in his chest, exploratory surgery, radiation treatments and bone marrow asparates (he had to have so many our insurance didn’t want to pay for some, they said it wasn’t necessary.) He now has cognitive side effects from the therapies.

You see, one beautiful July morning in 2004 Grant had gotten out of bed and his little face was very swollen. He also had a cough and some wheezing. I actually thought maybe he had been bitten by a spider. I made an appointment with his pediatrician. The pediatrician diagnosed Grant with having allergies. That evening Grant had fallen asleep on the couch and as I went to carry him to bed he started crying & could not catch his breath. As 911 was about to be called he took in a deep breath & started breathing normal. My husband & I decided we would take him to one of the Children’s hospital satellites first thing the following morning.

The next morning they took a urine sample, chest xray, and did a physical. We were told everything looked good and they agreed Grant probably just had allergies. They did give us a prescription of steroids to bring down the swelling.

When we arrived home there was a message waiting for us from the Children’s satellite…the X-ray had not been read correctly. It was read by someone in training. After we left, the attending radiologist looked at it and was concerned. We were instructed to continue the steroids and go to the main Children’s Hospital if Grant’s symptoms worsened and in two weeks follow up at the main Children’s Hospital for a CT scan.

The day of the CT scan our lives were forever changed. We were told our baby had Lymphoma. I wanted to just lay on the floor and die right there. I asked God to pease just let it be me, not my baby. We were told Grant had a huge mass in his chest. It was so large it was blocking his bodily fluids from draining properly through his body. The fluids were getting backed up in his head and around his left lung and heart. He was admitted to the oncology floor right then. Just looking at the word oncology made me feel like I was going to vomit. Grant was crying by this time. He was wanting to eat and the iv taken out. My husband and I tried to explain to him he had “yucky” stuff inside him and the doctors were going to get it out by leaving the iv in. Grant spent his fourth birthday in the hospital.

A biopsy was done and Grant was diagnosed with stage III T-cell Non Hodgkins Lymphoma. It was do hard looking at Grant’s chest where they had cut his little chest wide open. The doctors told us this was rare, usually children are 12 years old or older when diagnosed with this type of cancer. We were told this was an aggressive cancer and could grow from a grape to a grapefruit in day. They said this cancer either responds very well to chemo or grows out of control. They gave us hope Grant would respond well to the therapy and felt he had a good chance of going into remission.

The doctors started Grant on a treatment plan, but the mass wasn’t responding or growing out of control. This cancer was mean & had them confused. It was then they told us they weren’t sure if Grant had a 50 % chance to beat this. His treatment plan was then switched to the most intense protocol they could offer. This would be close to three years of treatments & consisted of at least every other week staying in the hospital, (usually about a week and a half and we knew our one year old didn’t understand why we had left him behind) and after getting half way through the protocol Grant would be able to be admitted to “day hospital” (8hrs) of chemo and go home.

This protocol also consisted of Grant vomiting and unable to control his bowels, us holding him down so they could inject a huge needle completely into the muscle of his thigh while he screamed “Please mommy, no more no more, mommy!” (I still physically get sick when I think of it.) Grant crying because he missed his brother, being admitted whenever he would get a fever due to his immune system being weak and unable to fight off any infection, being admitted because he had a battle with cellulites in his foot and leg due to a splinter that wasn’t visible to the naked eye, trying to explain to our four year old he can’t eat or drink anything all morning and early afternoon because he will be getting “sleepy medicine” , watching bags of another persons blood & platelets going into our baby over and over again, over hearing the oncologist tell the team of doctors to do another blood draw because he would rather hold off on giving Grant blood that day because he had had more blood given to him than any other child on the floor, your child’s face now swollen so badly it looked like it was going to pop from steroids, two needles stuck in his chest, him having to walk with an iv pole everywhere he wanted to go, (if he had the energy), sometimes not being able to walk at all from the pain in his legs from the chemo, having anxiety so badly if he touched something I was afraid he would get a germ and die from an infection… I’m sure there are many other horrific encounters that I’m not thinking of at the moment.

We had gotten to the place in the protocol where Grant should have reached remission, but the mass was not responding to the treatments. Our oncologist wanted to do one more big round of high dose chemo and we agreed. Unfortunately, the mass remained the same. The only change was the impact it had on Grant’s little body. He was already so weak & frail, but now it was more then I thought I could take. He was a skeleton with skin and he had mouth sores in his entire mouth throughout the inside of his entire body down to his rectum. (Side effect from the chemo) He was unable to swallow his saliva & had to spit it in a cup. A pain management team was assigned to him and hooked another tube up to him with morphine, but it was a PCA pump. This would allow Grant to push a button every few minutes to give himself the morphine.

It was then that we were told Grant’s body couldn’t handle anymore treatments. They told us they couldn’t get him into remission. They mentioned a study drug, but didn’t know much about it. We were coming to the end of the road. Really? After all this, I’m going to lose my baby? After him being so strong and brave, there’s nothing else?

We were in the hospital a month and then we were sent home. By this time Grant’s oncologist had come up with a plan and mentioned wanting to do exploratory surgery on Grant in two weeks. He was hoping Grant would gain some strength back by going home for a couple of weeks.

His oncologist mentioned sometimes scar tissue can look like cancer on the CT scans. We were concerned because the mass was not only on the CT scans, but still lighting up on the pet scans. (Indicating it was cancer) This was going to be a very invasive surgery. The surgeon wound have to go around Grant’s left lung and heart to get his hands into Grant’s chest to really get a good look. We agreed to the surgery. Many of the other oncologist were against it and the surgeon didn’t recommend it. Our oncologist had become family and we trusted him. Not to mention we were praying for scar tissue, this was the only way to find out and we weren’t going to take our child home to die, we were never going to stop fighting!

During the two weeks at home we prayed & asked others to continue to pray and to ask others to start praying and sending good energy and thoughts our way. Two weeks went by and Grant went for the exploratory surgery. The surgeon called to a conference room and said he couldn’t believe what he was about to tell us…..there was no sign of the mass or scar tissue! Both the oncologist & surgeon couldn’t explain it. The oncologist could only suggest the chemo must have been working on the cancer cells during the two weeks we were home. Grant was scanned again that day to be sure nothing showed up ( what had been appearing on the scans- the mass) and nothing did! A true miracle.

Yes, this is all great and happy, BUT Grant will always have to have follow ups to check for relapses & for damage to his body from the treatments. He has & will continue to have blood work with the oncologist, EKGs, echos, blood clot checked he has a blood clot in his heart most likely caused from the port), etc with the cardiologist for the rest of his life. They will never say Grant is cured because of the type of cancer he had. He has to be seen by a neuropsychologist because he has cognitive side effects from the radiation & chemo injected into his spinal fluid because the doctors wanted to be proactive. The longer he is off treatment the higher the risk of having heart problems increase, growth issues, reproduction side effects, relapsing, and the list goes on and on.

Have you ever heard someone say “I wish my baby came with a manual.” Well, mine does. Grant will forever have to keep a huge manual with him containing all his treatment information from Children’s Hospital. This will be used by any new doctor Grant may choose to see as he becomes an adult. I am forever grateful my child is a survivor, but I live with survivors guilt, have horrible anxiety, PTSD & my own health issues now. No, I don’t want pity, but just shedding light on how this disease can screw up so many lives in so many ways. This disease is so evil. It continues to try to win in other ways even when you hear the beautiful word “remission.”
We need to educate society on the horror these children go through both during and after treatment. We need to find treatment plans to beat pediatric cancer and allow these survivors to lead normal lives…before you decide NO on lighting up GOLD just read the following and imagine the child you love most being the child you are reading about…a few days ago you were told this child has an aggressive cancer, you have to hold the child down, (you, the person who is suppose to love and protect them) so some stranger can come and stick a huge needle in their muscle, then the burning of the poison. Oh, but wait…the vomiting, let’s not forget the vomiting that follows along with uncontrollable bowel movements that their bottoms bleed, mouth sores so bad they can’t swallow their saliva. Telling this child they are not going to have hair much longer, you’re sorry, but they can’t go home, you know the stitches hurt, but you know they are tough, you know they are hungry and thirsty, but they have to wait so the doctors can take “pictures” Can you imagine being that child? That parent or adult? I can tell you, it’s so horrific there are no words to describe your emotions or feelings. Just think, this is normal for these little children fighting for their lives. People turn their heads because it’s too sad & think to themselves “research is being done”, there’s nothing I can do to help anyway. Turning their heads will not help & the people that do know they can help and want to help need to be made aware of where to donate (pediatric organizations so our children receive the funding) and how they can help. That’s why we are asking you of this huge favor. We don’t feel like you owe it to us, but don’t you believe these children deserve to be recognized for their courage, bravery, and battle they are up against? I know I do.

You mentioned lighting up for world cancer day…Yes, all cancers are terrible. Yet it seems as though we only hear the sad stories of the adults who are fighting & going through hell or who have lost to this battle. Let me tell you, children experience just as much if not more. As an adult you understand why people are doing things to you that hurt or make you sick, young children do not. As a nation we are recognizing and supporting each other as adults. If we don’t do it for our children, who will?

I truly believe if we will stand together as one we can and will change the lives of children diagnosed with cancer. Now, please I ask you on behalf of all the people all over the world that have or will be effected by pediatric cancer, GO GOLD!! It’s one day that will change millions of lives! Wow, wouldn’t that feel great!

Thank you for taking the time to read my lengthy letter. Sending positive energy to open the mind and hearts for all at the Empire State Building,

Kara