Cycle 3~Days 1 & 2

Yesterday was the start of cycle three of chemo, 8 hours at the hospital followed by 6 hours of IV fluids at home. Although it was a long day and we were so relieved to be home, it went by without a hitch. He didn't have any nausea, only mild pain, and no other major issues.

Today was a different story entirely, today was rough. Jimmy was woken up at 6am with severe nausea. He woke me up and I gave him his Zofran, (anti-nausea med) but this time it didn't work. We had to be at the hospital early today in order for Jimmy to get his CT scan and that was not a good experience. The nurse who did the intake and put in his IV should not have been at work this particular day and I feel she shouldn't be in the profession at all. Pediatric nurses should have a special kind of personality and they should feel called to do this type of care. Kids are scared, in pain and need to be treated like they matter, not just another random kid in their monotonous day. Jimmy has a fear of needles that has intensified since his diagnosis, so I reminded him before we arrived that he would need to get an IV for the CT scan. When she came in to insert the IV, she gave him no warning, didn't ask him anything, just stuck it in his arm...or should I say jammed it unsuccessfully in his arm? As she did so, he yelled, (which he never does), and as she is looking around for the tape, she is moving the needle around inside his vein. At this point, he is tearing up, she takes her hand off the needle in his arm to reach for something and blood starts spraying everywhere, and she doesn't bother to clean it up or ask if he's ok...nothing. Another nurse who heard Jimmy yell comes into the room and has to tell her to wipe the blood off Jimmy and remove the table so he doesn't have to see it, and then she excuses the first nurse so she can finish taking care of Jimmy herself.

After the CT scan was finished, two of the nurses pulled me aside and let me know that they had already had a talk with her today about the same type of behavior and that I should ask for the other nurses when he goes in for his scans and file a complaint. It was upsetting enough to see someone hurt Jimmy but the part that made me the most angry was for this nurse to act so nonchalant about the whole thing. If she ever comes across this blog, I would just like to say, YOU WILL NEVER TOUCH MY SON AGAIN!

After the fiasco in radiology, Jimmy had to be taken in a wheelchair to chemo because his nausea and pain were worse now and he was really shaky and dizzy. He was given stronger anti-nausea meds which knocked him out, thankfully, because he needed sleep. He was also given stronger pain meds and he was slightly dehydrated, so they gave him something for that, which caused an even longer day than expected, they actually considered keeping him overnight. We were incredibly glad to go home and relax.

Jimmy has had a hoarse, shaky voice for a couple weeks now, which I attributed to allergies or a side affect of chemo, but Dr Dole said it could be the chemo damaging his vocal chords, so now we have to keep an eye on that situation. Chemo causes so many scary, potentially dangerous things that you would never think of as something to worry about in the midst of the greater problem. It would seem as if the fact that my child has cancer would be enough of a worry, but no, I have ten other balls in the air to keep an eye on so that none of them get past me and hit the ground.

If it hasn't become apparent by this point, my love for this child is huge. Everything that we have been through together, everyone who has come in and out of our lives, everything we have mourned and everything we have celebrated has brought us to this point. Everything that has happened in the last 17, almost 18 years, has strengthened our relationship and made us a family. We will get through this together, with the love and grace of God, and we will come out on the other side stronger than ever. I believe this experience will grow Jimmy and show him how much he is loved and supported and that with a little faith, you can get through anything.

Christmas Gift

This morning we received the best Christmas gift we could have ever been given. The dr read the results early and told us the chemo is working, it is killing the cancer cells!!!!!!!!!!!!!!!!!!!!!!!!
He said the response is excellent and we are going to continue with the chemo protocol he is on right now and he doesn't need to change anything. So, we will continue with chemo next Wednesday as planned.

I am so grateful to our dr for not making us wait until next week for the results and I am thankful to God from whom all blessings flow.

Merry Christmas

Wednesday, December 21st~Update

This week has been an emotional roller coaster. Nearly every day something has happened in this ever-changing journey of cancer. Just when we think we have a handle on daily life and what to expect, life throws us a curve ball.

Monday morning, Jimmy was awakened with intense pain in his leg, he came in to tell me what was going on and then just fell to the floor in tears because the pain was so bad. All I could do was give him pain meds and massage his leg until the intensity of the pain lessened. Thankfully he hasn't had that again this week. Today his dr said that it may only get worse.

Since it was the end of Jimmy's 2nd cycle of chemo, today he had another PET scan to determine if the chemo is working. The results could be any one of these: the chemo is working and killing the cancer cells. The chemo isn't working, things are unchanged and we need to change the chemo protocol. The chemo not only isn't working, but the cancer is growing and/or has spread. It never occurred to me that the last was even an option. Of course, since it's the holidays, the person who reads the PET scan is on vacation, so we won't get the results until Tuesday when Jimmy gets another CT scan and sees the dr. We get to spend the next 6 days in limbo, merry Christmas to us.

Yesterday, we were told that UD and the Dayton Gems would like to have a benefit game to honor Jimmy on January 28th! This was such exciting news, and light in a week of such uncertainty. I continue to be amazed at the generosity shown by the people around us and especially by the love God continues to show us through others. Jimmy is so excited and I would love to have everyone there to show Jimmy love and support! (More details coming soon)

The other day we were having a particularly long day of tests, appts and chemo and we were both hungry and tired, so the plan was to get dinner and then come home and relax. When I asked Jimmy where he wanted to eat after leaving the hospital, his answer was "I just want to pick up food and go home to eat so I can be with Charlie." This may not mean anything to anyone else, but to me, it says that home is a safe haven for him and all that matters is our little family of three. One of my main goals as a mom was always to give Jimmy a warm, loving, stable home, so his comment meant everything to me. This Christmas is very important to us for many reasons, and all I want is to make sure it's the best Christmas for Jimmy. I am surrounding him with the people he most loves, (and his favorite 4-legged loves), so that he can just enjoy a day without anything involving drs and scans and chemo. I want him to know he is loved, important, and supported.
I hope everyone has a great Christmas and remembers why we celebrate Christmas in the first place. God is good, all the time.

Half Way Through Chemo!

Jimmy just finished his 2nd cycle of chemo today. The first three days were fairly easy with little to no side effects. He had a touch of nausea the first day, took his medication, and that was it, until last night. Yesterday Jimmy started to have some numbness and tingling in his hands and fingers, it wasn't too bad, so we just chalked it up to another side effect and didn't give it much thought. Today when we went to chemo and Jimmy responded to the litany of questions he is asked before every chemo appt, he told the dr about his hands. We found out that it's a side effect of Vancristine that can go from bad to worse quickly, potentially spreading to other body parts and paralysis. Typically, when Jimmy has problems during chemo, it's due to this same drug, so it's not something to be taken lightly.

An hour into chemo, he developed numbness in his lips and tongue, while that could potentially provide comic relief for me for the day, it's not a good sign. Dr Dole stated that we will see how things go during his off week, and if the situation doesn't resolve itself, the only resolution is to lower the dose of Vancristine. They would only lower the dose a minor amount, but any amount that doesn't follow the protocol of his chemo plan, compromises his cure rate. That terrifies me. However, if they don't lower the dose, it could cause him to be paralyzed. Which also terrifies me. Needless to say, I am praying that the problem vanishes while he is off the chemo drugs.

Other than that, his blood levels are lowered, but still in the healthy range. He has gained 10lbs so far, which I don't really see, but he could definitely use it. His appetite is voracious, his mood is "normal", his spirit is unbeatable.

We have numerous plans from now through the holidays until he starts his next cycle, so it looks like we will be able to attend all of them. Jimmy will be sporting his cool hats and I will be carrying a grateful heart for a fantastic kid.

We Get By With A Little Help From Our Friends

Last Monday morning, Jimmy awoke with a large portion of his hair covering his pillow. He called me into his room to see it and look at his head, he was fairly upset. So, I told him I thought it was time to go ahead and shave his head because I thought it would look better and it would be easier to have it taken care of rather than waking up each morning and seeing more gone.

My friend Tara had offered the day before to come to the house and shave his head so that it wasn't something I would have to do and so we wouldn't have to go out to a salon and have it done.

She came over the next afternoon and Jimmy reluctantly came into the kitchen and sat down. He slowly took his hat off so she could begin shaving his head, it was so hard for him to remove his hat in front of her. I think he slowly began to feel comfortable, thanks to Tara, she continued to talk to him the entire time she was shaving his hair. Thankfully, she has a way of making people feel comfortable and good about themselves, so it really helped him to feel less vulnerable.

Jimmy is blessed with a beautiful bald head! I think he looks quite handsome, he reminds Tara of Michael Phelps (yuk), and he reminds me of Lex Luthor on Smallville. The most astounding thing is that even though he had just had his head shaved due to the fact that he is undergoing chemotherapy, he still flashed his ever present smile. That's my boy :)

Friday, December 2nd~Update

Jimmy had his end of first cycle checkup on Wednesday. He gained 7 pounds in a little over a week, which is caused by the Prednisone. The nurses stated that he could continue to gain weight this way throughout the coming weeks. It will be interesting to see Jimmy with a little bit of weight on his body, he has always been tall and thin. Well, up to age two, because then he resembled a Buddha~super cute :)
The doctor stated that since Jimmy is so thin, he will have more problems with body and joint pain from one of the chemo drugs. It typically causes more aches and pain when there isn't as much body fat.
A couple of the side affects Jimmy is dealing with have come on a little too soon, usually kids don't get throat pain and mouth sores until the 2nd cycle. Dr Dole said that this will probably mean that his symptoms will progress and cause him more trouble during the coming weeks. Hopefully, Jimmy will prove them wrong.
Jimmy has lost a large portion of his hair, a couple of minor bald spots, but mostly just a rapid thinning. Especially on the side he sleeps on and where he wears his Turtle Beach headphones for playing Xbox. He isn't happy about losing his hair by any means, but so far he hasn't gotten upset about it. Whereas every time I notice more gone, my heart sinks.

I think that when God gives you a child and you are granted motherhood, it should allow you the ability to take away a child's pain. It's so hard to love someone so much and not be able to fix it. When Jimmy was little, he used to think I could do anything. He thought I could make everything alright with a kiss and a band aid, I so wish I could do that now. Now he knows that I can't magically banish this sickness in his body, but he know things that are realistic. He knows I will be with him the whole way through. He knows I will be sitting in the infusion room while he gets chemo. He knows that I will be with him when he gets poked, scanned, and scrutinized. He knows that I will be here for him when he needs me~for food runs, to listen to him talk, answer his questions, protect him, be attentive to his treatments, and when the time comes, shave his head. All these things, I do because I love him more than anything, he is so much a part of who I am. He is my son, my child. I am a flawed, imperfect person and I have made many mistakes in my life, but Jimmy is the one thing I did that was perfect.

God's love is perfect. He doesn't make mistakes. You are His child. He didn't make a mistake when He made you. If I, as an imperfect person, love my son as much as I do, imagine how much God loves you. If I feel as connected as I do to my son, imagine how much God feels connected to you. He knows all, He sees all, He knows the pain you are in, the guilt and suffering you feel and also the joys. He wants to be with you in all of it. What are you waiting for? All you have to do is ask...