Healing

One dictionary defines remission as a diminution of the seriousness or intensity of disease or pain; a temporary recovery. The first part of the definition I will agree with, the second part is what troubles me. Temporary. Who knew temporary could be such an ominous word?
Jimmy has been in remission for one year, for which I am so grateful, and we quietly celebrated as he wished, just he and I. It's a wonderful thing to know that cancer is no longer present in the body of your child. However, it's what isn't talked about, that scares me to the point of paralyzing fear. What if it comes back? What if is comes back with a vengeance? What if he gets an even worse, more aggressive cancer? Just typing that sentence made my heart race and my throat tighten. If you have ever had a child with cancer, you understand the kind of fear I'm describing...but I know that I'm speaking to a small percentage of people in my little corner of the world.
I've learned from reading various blogs written by this small percentage, that it's very common for the parents of children with cancer, to fall apart during remission. I, like so many others, held it together during my son's illness so I could be strong for him, protect him, and do everything that needed to be done to help him get well. I knew that once I allowed myself to comprehend our situation, the pain might be more than I could bear. I had to be strong, capable, together. In essence, I had to be everything that my son needed., I would not fail him.
So, although I don't think about recurrence every moment of the day, I do think about it every day. It is a fear every day. That fear turned into anger with God. My son did not deserve to get cancer. He did not deserve to go through all the pain, sickness, and fear, of having this horrible disease. He was always a good boy, smart, funny, a blessing to everyone who loves him. When there are so many evil people in this world, why Jimmy, why not them? I knew that God could work miracles, why did he allow this? I still don't understand, and I don't know if I ever will.
Throughout his illness, my faith was strong and I knew God was an ever present force in my life. I knew that He was with us and beside us through every surgery, every chemo infusion, ever radiation appointment. My faith never wavered and was the strongest at this time in my life.
The last time I went to church was June 3rd, 2012. For the past year, I haven't had the least bit of interest in sitting in one of those chairs facing a stage, listening to someone talk lovingly about a God who I felt had betrayed me. I have held God at arms length the past 378 days.
Tonight, I attended a celebration for a friend of mine, where another guest said she wanted to know about me, and she proceeded to ask something about me and church. Anyone who knows me well, knows that I detest lies and I'm also terrible at hiding my feelings...so I knew of no way around the subject. I proceeded to explain in as general a way as possible, my son's illness and my reason for not attending church. You know, it's impossible to not praise God when speaking of Jimmy's healing, I completely attribute that to all of the prayers and God's hand on my son. When I said, praise God for healing my son, I heard myself say those words.
I gave up on God, but He never gave up on me. He placed me at that party, and He placed the people there who would be a part of pulling me back to Him. I know that my feelings of anger won't go away overnight, nor will my fear of a relapse, but I do feel confident that through it all, my love for God and his infinite grace, will be my strength.

Dayton Daily News Article

http://www.daytondailynews.com/dayton-sports/gems-game-this-weekend-to-help-teen-facing-cancer-1319347.html

HALLELUJAH!!!!!!!!!!!

Chemotherapy is now a thing of the past! Jimmy made it through 3 months of having needles constantly jabbing his skin, filling his body with poisons that are meant to kill an even more poisonous disease. ~We had the nurse take a picture on the last day of chemo :)

He made it through sitting in a room for hours with a constant flow of medical personnel playing the game of twenty questions during every chemo infusion: Do you have any pain? Can you rate the pain form 1-10? Have you had any nausea? What medications have you taken today? When did you last poop? Can you walk on your tip toes? Can you walk back on your heels? Have you had any fevers? Have you been exposed to any illness? Are your hands still numb? Have you been eating and drinking well?...you get the picture.

He made it through the first days of each cycle with the same routine: weight, height, temperature, blood pressure, wrist band, get settled in a recliner in our infusion room, ask all the above questions and then some, access port (which requires inserting a needle into his port w the IV tubes for chemo drugs), take blood samples to check blood counts and to see if he is able to receive chemo that day, pee into cup to see if he's had enough fluids (if not he had to be given fluids which takes an extra hour), Dr Dole comes in and asks all the above questions and does physical exam, finally a nurse comes in every 10-15 minutes to either change chemo drugs or check Bob (IV pole), he got chemo drugs over a period of 8-10hrs on those first days of each cycle. At the end of that time, he would usually go home hooked up with a bag of IV saline for 6 hrs, after which I learned to flush with Heparin and another fluid to keep his port from being infected. At the end of the day, he usually slept like he'd been knocked out cold. For the next 5 days, at least, he usually dealt with symptoms of fatigue, nausea and every type of pain.

So, when I say he made it through, what I actually mean to say is, he dominated chemo. Jimmy is something to be reckoned with, together with all the prayers sent up, and God's protection, chemo didn't have a chance to bring him down. I'm so proud of him. He is so strong and brave, he is my hero and a blessing to me from God.

Jimmy will have his Pet scans and other scans in 3 weeks, he will start radiation 2 weeks after that, and will receive radiation daily for 2-3 weeks. For the next 3 weeks, Jimmy can rest and recuperate to prepare his body for radiation. Please continue with prayers.

Tomorrow night is the Dayton Gems hockey game, we are looking forward to seeing everyone, and I'm hoping Jimmy has a blast!

January 24th~Update

I have been a little lax with the blog updates because I always post the info and Facebook and then forget about the blog! So, here is the FB post from a week ago...

This has been one incredibly blessed day! We went to meet the guy from the Dayton Gems to get more tickets, (we sold 40 more today, totaling 210!), we met several people including the team owner/president/manager, etc. and toured the terribly smelly locker room, seriously bad! They gave us t-shirts, hats, programs, posters, cups, cow bells. Here's the amazing part: we get there and he says "we have been getting call after call after call for tickets from people who know about Jimmy, we don't typically get this many calls...you guys must be really nice people!" lol~He said the owner of Bob Evans in Tipp called them and want to do a fundraising night for Jimmy, and Great Clips plans to do haircuts in the lobby at Hara the night of the game as a fundraiser!! A reporter for Tipp Register Herald called them for an interview about the benefit and I did a 30 min phone interview with her today. I have another meeting w a writer for Tippecanoe Gazette on Thur. I LOVE that they are writing about Jimmy as a person and not just an ad for the benefit game! The part that I cherish more than anything is that this many people are doing all of these things for my son. The day I sat in that dr's office and was told that my baby boy had cancer, I thought I would die from pain and heartbreak. But God didn't allow that to happen, He has been with us the entire time and protected my son when I couldn't, and he has given us hope and filled our lives with amazing people with hearts that want to make things a little easier for us. All I can say is thank you ♥

Here is the link for the article from the Sunday Record Herald~Although I am generally happy with the article, I would have liked it a lot more if it had been completely factual. The writer took A LOT of liberties with things that were said and not said. There are things in the article that were in quotes that I didn't say and a lot of things worded differently, but it is what it is.

http://www.weeklyrecordherald.com/localnews/tipp-city-news/58-tipp-city-news/2725-tipp-is-jammin-for-jimmy.html

AND tomorrow is the last day of chemo!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Jimmy's Checkup Update

I'm a little a slow at updating the blog regarding the news from Jimmy's checkup since I have already updated Facebook and have been a little preoccupied with the benefit game.

Jimmy had an end of cycle checkup last Wednesday and we received all good news!
Jimmy doesn't need to be "semi-isolated" any longer due to the Pantamedine shot he receieved the week before, it brought his blood counts way up. His White blood count is still pretty low, but not in the danger zone.
The suspicious lymph node that they found on his latest PET scan turned out to be nothing, it was just a muscle showing up as highlighted--so that was a GI-NORMOUS relief!

Lastly, although Dr Dole is going to lower his dose of Vancristin, he doesn't need to lengthen his chemo cycles because it's being reduced such a small amount. So...that means that his 4th cycle that starts Wednesday is his last cycle of chemo!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

End Of Cycle 3~Start Of A Rough Week

Last Wednesday the 4th, was the last day of cycle 3 of chemo. We left the hospital excited that it meant there was only one cycle remaining. Cycle three continued to cause neuropathy in Jimmy's hands, it actually had gotten worse the 2nd week. He had more nausea and pain than he had previously, but all in all, he felt ok.

On Wednesday night, he started complaining of all over body pain that went from bad to worse quickly. He was eventually in so much pain that he was lying on his bed curled up in ball, and the Tylenol with Codeine was no longer handling the pain. I called the after hours number at our oncologists office and spoke to one of Dr Dole's partners, we shall call him Dr Idiot from here on out. (as I do in conversation) When he answered the phone, his greeting was "what do you need?", I started to tell him what was happening and he says "why is he coming to our office?"---WHAT? He didn't even bother to read his chart or educate himself on Jimmy's health. I was instant irritated but I let it go and continued telling him what was wrong.

A little background~Jimmy's doctor and nurses have said continuously and emphatically, if ever there is an issue, and the meds aren't helping, they will give him something else, please call because they need to know and Jimmy is not to sit home in pain or sick for any reason. Also, Dr Idiot has never met or treated Jimmy previously, nor had he ever met me.

After I finished telling him how much pain Jimmy was in and that the Tylenol wasn't working, he preceded to tell me to just keep giving him the Tylenol and alternate with Advil...and that was it. If Codeine isn't working, how the heck is advil going to work? I tried to express to him again how much pain he was in, the instructions from Dr Dole to call and they would prescribe something else...but Dr Idiot was too busy acting like I was a crack addict trying to get drugs for myself to care about anything I had to say. By the time I hung up the phone, I was so angry, I couldn't even express what had just happened.

After thinking about it for a few minutes, I got back on the phone and called the office again, I told them what happened, that I refused to speak to Dr Idiot again, that my son was in pain and someone needed to do something about it immediately. They connected me with the nurse manager who put a call in to Dr Dole, he arranged everything at the hospital for our arrival.

Once we got to the hospital, they rushed us back to a room so Jimmy wasn't exposed to germs in the waiting room, a doctor came right in and they started giving him morphine that was ordered by Dr Dole, and sent him home later with percocet. The next day Dr Dole's nurse called to check on Jimmy and stated that Dr Dole was handling the situation with Dr Idiot and that after all the pain and neuropathy caused by the Vancristin, he would probably need to lesson his dose. We will find out in a couple days what that means for his chemo protocol. Lesson to be learned: Don't think for a second that you are going to mess with my son, God has our back.

Saturday started a new range of issues--Jimmy started having weird pain in his chest, hiccups every time he ate or drank, a rash, throat pain, extreme fatigue, and nosebleeds several times that day. Sunday night he got a nose bleed that wouldn't stop, by the time we got to the hospital it had been bleeding 2 hrs. I suspected that his blood counts were low. I called the after hours number and yet again, Dr Idiot was on call, I had no choice but to speak with him. Did he surprise me with his brilliant, caring attitude towards helping my son? No, he proceeded to tell me to have Jimmy pinch his nose until it stopped ,(which he was already doing), conversation over, that is all he was going to say. Thankfully, I had educated myself on Jimmy's health, and I asked him if it meant that Jimmy's levels were low, to which he stated, "yeah, maybe". I tightly said thank you and hung up.

We arrived at the hospital and again they rushed us back to a room, posted a sign on the door stating to stay out unless it was one of his nurses or dr. The dr immediately said that it was good that we came in because otherwise we could have risked Jimmy's health. (no thanks to Dr Idiot) They took his blood and found that all of his counts were very low, especially his platelets and white blood cells. He wasn't quite at the point of transfusion, but he needs to be on semi-isolation. He can't do any activities that would cause injury, he can't be out among people unless it's necessary, limited people in our house and if someone needs to be here, they have to wear a surgical mask and swim in Purell. Once again, God provided protection for Jimmy and surrounded us at the hospital with nurses and a doctor who treated him wonderfully.

All in all, it has been a fairly rough week. I am praying and hoping that Jimmy's counts will start to elevate. He has his check-up Wednesday and will have his counts checked. Jimmy is the single bravest person I know, I can't even express how proud I am of him.

Dayton Gems Hockey/Jimmy Jenks Benefit Night

PACK THE HOUSE FOR JIMMY!!! =) Jimmy Jenks Night!!

When
Saturday, January 28, 2012

Time
7:00pm until 10:00pm

Description
Dayton Gems Pro Hockey Team JIMMY JENKS NIGHT Saturday, January 28, 2012vs Evansville @ 7:00pm...

Featuring:Blade’s Birthday Blowout/Mascot ManiaYouth Jersey Giveaway(First 1000 kids 12 and under)Cupcake Giveaway (First 500 fans)

Jimmy Jenks was diagnosed with Hodgkin’s Lymphoma in October and is currently undergoing chemotheraphy, followed by radiation at Children’s Medical Center. Jimmy is 17 years old and attends Tippecanoe High School.

$1 from each ticket sold will be donated to the Jenks Family. If the Gems sellout on January 28th, the team will donate an additional $2,000 to the Jenks Famlily.

Tickets are ONLY $8 in advance for any sectionTo get the discounted $8 you must order by January 26th. This discount will not be available after this date or at the window. You will be able to receive $2 off any adult regular price ticket at the box office window on the day of the game by mentioning this flyer.