For My Jimmy

I am so thankful for you Jimmy. You are the love of my life, my best friend, my sidekick, my hero, my son. You have shown me what it means to love someone with your whole heart, unconditionally and endlessly. If you feel weak or scared, I will be strong for you. I will always be where you need me. I'm going to love you through this. I love you

Real Men Wear Hats

Irony can be a sadistic thing. During the two weeks of chemo treatments, Jimmy has done remarkably well. He has impressed everyone, including seasoned nurses, with how well he has physically tolerated chemotherapy and with his irrefutable attitude that this will not beat him; all with his innate ability to throw out a one-liner as needed.

As we have gone through all the motions of what a family does when your child has cancer, I think I have been lulled into a false sense of deliverance from the chemo symptoms that are the most terrifying to me. Those symptoms being pain, constant vomiting, and hair loss. The latter not so much terrifying, as much as the visible sign to the world at large that Jimmy has cancer. Maybe I have just contrived this scenario that since he hasn't had any of these symptoms while in this first cycle of chemo, then he is probably not going to be subjected to them at all.
This week is his week off of chemo and as I said, irony can be a sadistic thing. This is the week he has had the most symptoms, and he is now taking his nausea medicine more often and the pain pill at regular intervals. Today was also the beginning of his hair loss. While it was only a little bit, it stopped my naivete in it's tracks. The instant he came in to tell me, my heart broke for him. I know that it's very likely going to progress this week. So, I did what any good mother would do, I got in my car and drove to Kohl's and bought him the hat he wanted to make him happy. I loved his smile when he put it on and my grandma said "Are you really going to wear that in public?" His response...laughter and a big YES!! How great is this kid?!!
While I hoped and prayed for asylum from the worst symptoms, I know this will be another thing that he will get through with flying colors. (and a few cool hats)

End Of The First Cycle

Jimmy had his 4th chemo treatment yesterday and that was the last treatment in the first cycle. He hasn't had any symptoms so far, except burning in his throat, jaw pain, and yesterday he started having body aches and pains. He takes Tylenol w Codeine for that and it seems to help him greatly. He is eating and drinking normally, which is good because he can't lose any weight due to how thin he is already. So, he is off chemo all next week and doesn't return until the 7th, which will be another 10hr day.

I was able to talk to my cousin today, her husband was diagnosed with cancer the same time as Jimmy, which is still unbelievable to me, so it was good to talk to someone who not only knows and loves Jimmy, but is going through a lot of the same things. She gets it. There are a lot of very supportive people in our lives, but there are a few people who for whatever reason, say the dumbest things to us. For the most part, we don't fault them, sometimes people just don't know what to say, but there have been times when I think to myself, "Really? Did she just say that to me?" I know that God is already in all the tomorrows, He already knows how things are going to work out and He has a plan for Jimmy and my cousin's husband. But even knowing that, being told that we are "lucky" for this or that, doesn't help, being told to be grateful that he has cancer, doesn't help, being told to live life like it's our last day, def DOESN"T help---my son still has cancer! My child that I have raised by myself, the little boy who has filled my heart with so much love and my life with so much laughter, has cancer. I am not happy about that in any way, I am not going to pretend to be ok about it, and if I want to have a bad day, I will.

Now that I have had my little rant, I will say that through this I have grown closer to God and even closer to my son. There are small blessings in the midst of this nightmare. God has shown us His perfect love through the service and generosity of the friends and strangers around us. He has shown me that I am a strong woman, I have a fierce love for my son, and I do rely on God. I believe he is showing my son what a christian family means.

Today is Thanksgiving and I hope everyone has a wonderful day and thanks God for all the blessings in their lives. I thank all of you who have prayed and continue to pray for Jimmy's health. We are thankful for you.

Day three of chemo

Jimmy's chemo was only supposed to last 2 hours today, but we were there 4 hours because he was feeling sick, so they slowed down his drip. Once he started to feel nauseous, they gave him the same anti-nausea med from the first day and it knocked him out--sitting up, in mid-sentence. At one point they were trying to remove the needle, for the weekend, that inserts into his port , and as he was taking the bandage off , (which is pretty painful), and he literally fell asleep.

This med that they give him for nausea not only makes him sleepy, he gets dizzy and wobbly on his feet, so he has to be taken downstairs to leave in a wheelchair, otherwise he would be walking into walls or just falling over in general. It's obviously amazing medicine to be able to combat throwing up after they fill his body with poisons.

I did have a bit of a mama bear moment today. The dietitian, whom we have yet to speak to, came in to the room today to go over her packet of paperwork regarding food Jimmy should eat, what to give and not give when he has certain symptoms, etc...everything I had already researched, as he was feeling sick and dealing with the after affects of the anti-nausea med. She had the worst timing and continued trying to read over this packet out loud to me (which I hate, I can read myself thank you) and kept trying to read and interact with Jimmy. God bless his heart, he was nodding off and trying desperately not to fall asleep and answer her and she was oblivious and just kept right on talking. So, I just stopped her and told Jimmy he could go ahead and sleep and not answer anymore questions and asked her to please just let him sleep. DUH

So, Jimmy fell asleep after we returned home about 5:30 and with the exception of about an hour, has been sleeping all night with Charlie, his faithful companion.

Day two of chemo

Today was a lot easier day at the hospital than yesterday, we were only there 3 hours. It seemed like we had just gotten there, when they unhooked Jimmy's port from Bob. Today Jimmy was able to take his Xbox and play it while he got chemo, so that was a great distraction for him. He only received three chemo drugs today, and they gave him different medicine for anti-nausea. So, we are hoping he will do even better than he did yesterday.

Today Ronald McDonald and the huge mascot from the Dragons were visiting the chemo wing and they came in to see Jimmy, that was pretty funny. He just smiled and said hi, and then looked at me and said "ok, now what do I say?" They gave him a Dragon's hat which he did seem to like, he's just a little too old to appreciate men in giant character costumes. (and I don't care who he is, a clown is a clown, and Ronald McDonald is creepy!)

The nurses told him that he will be contacted by Make a Wish Foundation and he needs to start thinking about what he would like. He is able to chose a vacation, someone to meet...anything he can think of. You should hear what two of his ideas are...

Our new lifestyle

The education nurse talked to me today about various things regarding what to watch for and what to do if Jimmy has symptoms and such. A fever is very dangerous for Jimmy to get, if he gets a fever of 100.6 or over, I am to call the hospital and let them know, and then get him there immediately, within an hour or less after the start of the fever, he will be given intravenous anti-biotics. A fever means a minimum of a 2 day stay in the hospital--we want to avoid that at all costs.

So, Jimmy cannot be exposed to anyone who has a cough, sniffles, rash, or diarrhea...let alone anything worse than that. So, if you plan on seeing us and have any of those things going on...DON'T! I will ask you, no matter how embarrassing it may be. If you even think you might have caught a stomach ache from your 3rd cousin in Arkansas that you haven't seen in 4 years, do not come around us. Seriously, if Jimmy gets a fever, I will find you. Just kidding. Sort of.

Jimmy cannot pet reptiles or anything in the rodent family. He can't share anything...food, drinks, chapstick, utensils, cups, nothing. He cannot eat or drink anything over 24hrs old, no leftovers, no opened water bottles. I had to throw out nearly everything in my refrigerator. No mouthwash with alcohol. He now has to be vigilant about sunscreen. As well as washing his hands, and anyone who comes over is going to have to swim in Purell. Well, at least use it. I have to get a flu shot in order to not expose him. I have to keep a mad amount of Lysol wipes at home to clean door handles, light switches, and any and all surface areas. After learning all of this, I was told to allow him to do all his normal things. Go to gatherings, movies, be around people! I'm sorry, what? Unless he is at a time when his white blood cell count is down, then we can only do things outdoors where it's open air, but not expose him to large groups of people and such.

So, basically, we are going to be living in a bubble for the next 4 months...but after that, Jimmy is going to be healthy.

First day of chemo

Apprehensive would be the perfect way to describe the way I felt walking into Children's hospital this morning for Jimmy's first day of chemo. I kept watching Jimmy for some sign of nervousness or fear, as I watched him inhale a sausage McMuffin in the car on the way...nothing. I asked how he felt and if he was nervous as we walked through the parking garage...nope. I quickly glanced at his face as we walked through the doors of the elevator taking us to the 2nd floor oncology wing...zero. As a matter of fact, he was cracking jokes all the way down the hall.

We were led to Infusion Room #8, (all the kids have private rooms), inside was a recliner, a couple other chairs, a bed, tv, phone, table, shelves w books and toys for younger kids, and the pole to hang the chemo IV bags on. (Jimmy immediately named his "Bob") All in all, a fairly comfortable room, considering it's purpose. Over the 10hrs we were there, he received 6 chemo drugs, and various other meds to combat nausea and dehydration, all hung from Bob, next to Jimmy all day. Jimmy went to the bathroom, Bob followed behind. Jimmy got up to stretch and walk around the room, Bob was beside him the whole time. Jimmy and Bob are going to be constant companions over the next few months.

During the time we were there, Jimmy ordered food, watched Ridiculousness and Tosh, (both of which I think are incredibly stupid, but it entertained him), surfed YouTube for subliminal message videos, and occasionally threw out a one liner that had the nurses in stitches and me, too. You would never have known he was there for chemotherapy just by his demeanor and attitude. He never complained, was never rude, never asked for anything...he just sat there and allowed the nurse to do what needed to be done to make him healthy.

Around 5pm, all of a sudden, he said he had pain in his stomach, so the nurse gave him a hefty dose of Benadryl. While she was putting it in his port, he fell asleep...hard. At about 6:30 we eventually woke him up and he said he was feeling sick, so the nurse gave him a anti-nausea med, which made him dizzy and sleepy. We have been home for 3 hrs now and so far, he hasn't had any more symptoms, and seems ok. He has yet to throw up or have any other problems.

I am so blessed to have the privilege of being Jimmy's mom, I have never been so proud of him than I have been the past few weeks. Not because he hasn't gotten scared or nervous, but because of his inner strength, perseverance, and positive attitude. All he wants is to get better, and come home to his house, his dog, and play games with his friends.
I am so thankful for the amazing nurse that took care of Jimmy today, I will never forget how great she treated my son, how she went out of her way to make us feel comfortable today, how she took the time to explain everything, and anticipated his every need.
I am so blessed to have such great, caring friends in our life who encourage us and who have been so supportive .
We are so blessed to have such an incredible God who knows what's in our hearts and minds and makes His presence known to give us comfort and peace.

Monday, November 14th~Update

Today we had our appointment to go over Jimmy's chemo medications and the short and long term affects. Discussed how they will handle all the things that will come up with having chemo such as nausea and hair loss. He will be on a very heavy dose of steroids to take at home, which will cause him to gain weight, (he was actually excited about that side affect). The steroids will cause his appetite to be tremendous on the days he isn't sick.

Some of the long term side affects are damage to his kidneys, bladder, liver, and heart. Some of which won't show up for 20yrs. His chance of sterility is 30%, which is disheartening, but we will leave it in God's hands, which is where the decision would lie under normal circumstances.

The list of short term side affects is a mile long: nausea, hair loss, stomach pain, numbness and tingling of hands and feet, burning sensation in hands and feet, acne, increased blood sugar, mood changes, low white blood cell count, mouth sores, fever, dizziness, jaw pain, blurred vision, extreme fatigue, muscle weakness, skin irritations, metal taste in mouth, and chills. One or two of these things would be difficult, let alone several at once. Praying that his side affects are minimal and he gets through the chemo without having too difficult of a time.

The first chemo appt on Wednesday will take about 10hrs, 3hrs on Thursday, and 2hrs on Friday, and then 2 hrs next Wednesday. Off 2 weeks and then start all over again.
When Chemo is finished, we will be driving to West Chester daily for radiation. All in all, the whole process should take about 5 months. If everything goes as planned, chemo should be finished by March 2nd, and then radiation will probably start about 2wks after that.

We are thankful that it wasn't stage 4, which could have meant daily chemo for up to 10hrs a day. We were also told today that Jimmy's treatment is one of the shortest of anyone they currently have, some kids are there for 3 yrs. That just broke my heart for the children and their parents, some of which are toddlers. I think about my cousins going through this at their ages and I can't even imagine. Since Jimmy is 17, he is able to take much stronger drugs to combat the disease than if he were younger.

Two things I know for sure: One--We are going to beat this and Jimmy is going to be healthy and cured. Two--We are going to have one hell of a party when it happens!

Friday, November 11th~Update

The bone marrow results were NEGATIVE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

So, that means he has Classic Hodgkins Lymphoma Stage 2A. Thank God for answered prayers!
Now the testing is done, we know exactly what we are dealing with and can start the process of getting this evil disease out of my son and getting him healed so that he can go on to have an amazing life. We know it's still going to be a long, hard road ahead, but at least we can be thankful that he isn't stage 4, which scared me beyond anything I would express.

Jimmy is still in some pain from his port, but the nurse said it's normal and it will probably continue to hurt into next week when he starts chemo.
He started to get angry today, and frustrated with the fact that he has this "thing" in his chest that sticks out and bothers him. He had trouble sleeping last night, partially due to pain and partially due to the fact that he couldn't lay on his stomach. At least now he has prescription pain medication that seems to be helping.

Thank you God for answering our prayers and allowing the results to be negative today, now we need to continue praying and watching you work miracles to heal my son.

Port Surgery Day

Today was the first day to the start of a long road ahead. Jimmy had his surgery this morning to have his port put in and his bone marrow test. I was nervous of course, but Jimmy was cool as a cucumber about the whole thing, he wasn't concerned at all...especially after having Valium before they wheeled him into surgery. Wow, did that have some kind of affect on him, he was a riot! Really wish I had video of the entire scene because I would have had some good material to tuck away for future use. (like when he referred to the pacemaker opening on his gown as his "nipple pocket") After a good 30 minutes of saying all kinds of crazy things, he started cracking himself up and getting the giggles. Everyone knows Jimmy is funny, but this was on a whole other level.

His port surgery went well, although he did have pain after he woke up and they had to give him extra pain medication, which meant it took longer for him to leave recovery. Hearing that he was in pain after surgery and I couldn't see him is such a helpless feeling. Didn't they know that was my son in there hurting? He continues to have some pain, but it's not too bad. He's home in his own surroundings and comfortable with our little Charlie by his side.

The situation became even more real to me today once it hit me that the port is attached to his heart, and I can now see it underneath the skin on his chest. I've been on the forefront of every bit of information, every test, scan, and every dr appt, but today was the day it really hit me that we are doing this. They aren't going to call me and say "oops, sorry Ms Jenks, we made a mistake, your son is just fine," that scenario is long past happening. They wouldn't do surgery and insert a foreign object into my son's heart unless it was serious.

So, we are going to go down this path of chemo and radiation; throwing up, losing hair, extreme fatigue...but we will do it together just like we have for 17 years, me and Jimmy, two peas in a pod. Except that now, we have someone else who walks the path with us, and He is stronger than anything that gets thrown our way. I believe in the power of prayer and I believe that God hears all the people praying for Jimmy every day.

We did get some good news today, the CT scan came back negative for the cancer spreading to his abdomin. So, we are just waiting to find out about the bone marrow test, we will know by 4pm tomorrow. Thank you for continuing to pray for my son.

Monday, November 7th~Update

Home from our appt at Children's where we saw Jimmy's oncologist, it was information overload. We received the results from Jimmy's PET scan, had a mini-briefing on Hodgkins and information on what the next steps would be with his surgery and chemo.

The PET scan showed that along with the mass on his lung, there are numerous cancerous nodes in his chest. The most concerning aspect is that the report stated a mild suspicion of something in the bone marrow, which would be very bad. They will do a bone marrow test during his surgery which will tell us definitively whether or not it's in the bone marrow. Please be in prayer for negative results.

Jimmy will have 4 courses of chemo~3 days a week the first week, then 1 day the second week and then off for 3 weeks, and then it starts all over again over the course of 3-4mths.
Tomorrow, we go to Children's all day to have 5 scans and tests done~a CT scan on his belly to make sure there is nothing there, and testing on his heart, liver, kidneys and breathing function to make sure he is viable for chemo.

On top of everything, we found out today that there is a chance the chemotherapy could cause him to not be able to have children in the future.

As of right now, his doctor is saying he has Classical Hodgkins Lymphoma Stage 2A (A=little to no symptoms).
If they find cancerous nodes in his abdomen, he will progress to Stage 3, if they find that his bone marrow test is positive he will be Stage 4. PLEASE pray that these are both negative.

Jimmy will have his surgery to have his port put in at Children's on Thursday at 10:30am. On Friday, we will get the results from all the testing and learn what will happen with chemo. On Wednesday the 16th, Jimmy will have his first chemo appt.

All of this still seems like a horrible nightmare, I just don't understand why this is happening to my son.

Friday~November 4th~Update

Jimmy had his PET scan today at Kettering Medical Center. For those of you blessed enough to not be in the know, it's a huge nuclear imaging machine that scans his entire body, every organ, to see if cancer is in any other part of the body. Jimmy was injected with a mixture of a sugar solution and a radioactive substance (tracer) that moves through his body to show cancerous areas. It concentrates in an area where there is cancer and shows up on the scan. Because of the way the tracer concentrates in active areas, Jimmy had to sit in a recliner in a dark room for an hour waiting for the tracer to distribute throughout his body. After which, they took him to the scan room where he had to lie on a table and have scans done for an hour, 7 sections about 4-5 min each, plus CT scans sporadically. I was allowed to sit in the room, behind his head while this was being done and talk to him since confined spaces make him uncomfortable.

This is what I was watching: Jimmy laying on a table wrapped in a blanket, arms above his head, unable to move, while he moved inside a huge machine that had lasers all over him to point out where it scanned. At one point, they were scanning his brain and there were red lasers all over his head and face. This is not an image that I can see of my child and not have a reaction. It was awful to see him in such a vulnerable place.

We FINALLY get all the results from pathology and from the PET scan on Monday afternoon when we have our appt with the oncologist. At that appt, we will schedule the surgery to have his port put in and bone marrow testing done. If all that happens on time, he will start chemotherapy on Friday. Please continue to be in prayer for Jimmy, I have a strong gut feeling, (mom feeling), that when he goes for his first chemo appt, that is when it's going to become real and hit him. I'm pretty sure it will happen for me when he has surgery, then his first chemo.

Courage Is Fear That Has Said It's Prayers~Dorothy Bernard

Have you ever seen movies where the main character is standing still and all the people around them are in fast forward, swirling in busyness, while they are frozen in place, unable to comprehend reality? This was me at our first visit to the pediatric oncologist. I was like a functioning alcoholic, I walked into the hospital passing people along the way, carrying my son's diagnosis like a secret I didn't want to get out. I was in survival mode; sign in, paperwork, wait in rainbow colored holding tank, vitals, run-down with nurse, meet and greet with doctor...all the usual requisites for a first time office visit. Except for one key thing...it was an oncology office.

This fact showed up in little places along the way, inspirational posters on the wall declaring courage and positivity, materials with recipes for things to eat when you can't eat, a red, locked box on the wall for discarded chemo needles...although I was growing uncomfortable, I was dealing. Until it was time to go to the front desk and schedule his next appt. As I stood at the desk waiting my turn, children of all differing ages passed by to go into the rooms where they would have chemo administered. I remember thinking that I felt so bad for them and wanted to hug them and make everything all right...and then it hit me, my son is one of those kids, we are in this office for the very same reason.

At that moment, it hit me that this is what our life will be for the next few months, coming and going like we belong there, the unfamiliar becoming familiar. I started to feel anxious and could feel my chest tighten and the tears were threatening to overtake my resolve to be strong and not fall apart. At that moment, I could hear my son laughing in the waiting room, quickly followed by the even louder laugh of my aunt who was with him, as they were playing Pac-Man and cracking up over whatever was happening on the screen.

Courage is a word I tend not to throw around lightly, but my son is the epitome of courage. He is stronger than I could ever pretend to be, he is brave in a way I never would have imagined. Every test, scan, blood work, IV, examination; he just plows through with rarely a complaint. As I stand on the side and shake the urge to grab him and run to a magical place where he isn't being poked, prodded and invaded.

It's always being said that children take their clues from a parent on how to act and feel, but I think I am learning more on how to be courageous from my son than he has ever learned from me.

The Beginning of Our New Normal

I would imagine that everyone who reads this is aware that 9 days ago, our world as we knew it, changed forever. After taking my son to the emergency room for what we thought was his yearly bout of bronchitis, we were told that the ER doctor found an "abnormality" and we needed to see our family doctor the following day. Hearing a dr say the word abnormality in regards to my child, was like he handed me a grenade, pulled the pin and walked away. I was in an immediate state of panic. After having seen our family dr, he referred us to a pulmonologist to do further testing and rule out anything serious. Jimmy had a CAT scan which revealed a large mass on his lung, the dr stated that the mass was highly suspicious for Lymphoma and they ordered a needle biopsy the following day. After the procedure was over, we were told we would have to wait 3-5 days for the results. Those were 3 of the most anxiety ridden days of my life. I watched as my son shut down, he wasn't eating, wasn't talking, and just wanted to zone out and play Xbox with his friends. Completely understandable and maybe the only time I can say I am truly grateful for video games. Over the course of those 3 days, I had quite a few discussions with God. The first day, I was sure that He knew this had to be a mistake and He would allow that to show up in the pathology results and we would go on our merry way. The second day, I started to think maybe something could be wrong, but if so, it would just be pneumonia or a weird viral or bacterial thing that some nasty tasting anti-biotic would get rid of in a week or so. By the morning of the day to get the results, I was numb and terrified. I was pretty much praying without ceasing. God, PLEASE don't let my baby be sick, please don't let the dr say he has this disease I am afraid to say by name. Please God, I know you can work miracles, I have seen you do it, heal my son, too. He is a good boy and doesn't deserve this. I continued sending up prayers all the way to the hospital.

It was not to be, as I sat in a cold, hard chair in a sterile room, the dr proceeded to tell me that my son has lung cancer--Hodgkins Lymphoma. My beautiful, funny, soft-hearted baby boy has cancer. My son who is supposed to be having his senior year with all his friends, looking forward to graduation and a future in computers. My son has cancer. I sat there in tears half listening as he continued to talk about a referral to a pediatric oncologist at Children's and what would happen when we went in for an appt...but all I could think about was when my son was 4 years old, sitting in the living room floor in his Woody costume watching Toy Story and giggling, saying "look mommy, there's Woody!"~that little boy can't have cancer.
Telling Jimmy he had cancer was the single hardest thing I have ever done in my life. After I told him, I asked him how he felt and what he was thinking, anything to hear him say something, anything. Through the tears in his eyes, he said "nothing to say, it sucks, but I will get rid of it and be fine...will I lose my hair?" NEVER, will I underestimate my son again. I have watched him deal with this for the past week, at times with anxiety, but mostly courage and strength. He is the bravest person I know. I have never been so proud to call him my son and I am so grateful that God allowed me to be his mom. I am so blessed .
Some may wonder how I can speak of God in a loving way, or why I don't blame Him for my son being sick. It's simple, God did not give my son cancer. God held my son while he was getting a CAT scan, He held him while he was scared during the needle biopsy, and He was with us when we heard the darkest news. He loves us and will be with us as we go through these next terrifying months. If it weren't for my relationship with God, I know that I would not be able to stand in the face of this evil disease and say we will beat it and my son will be healed.