Saturday, February 27, 2010

When I was Young


After a long and nerve wracking day of chemotherapy on Friday, CJ is now home and recovering over the weekend. CJ went in early Friday morning to begin a new course in his maintenance phase of chemotherapy only to discover he is neutropenic (very low white blood counts) which puts him at high risk for infection.

That was a shock since he was fine the last time we had counts done and we have been going about business as usual. We are on a race to boost his counts between now and Wednesday since we are scheduled to leave on our first ever family cruise. I will share more about that amazing opportunity God has given us in the future. Unfortunately, the low blood counts were only the start of the roller coaster of emotions to come.

We arrived early Friday and for the most part things progressed as usual until they accessed his port. As he waited for them to get everything ready, (it all has to be a really sterile environment so it takes some time to set it all up) I saw the tears forming in his eyes and this broke my heart. He has been so strong in this area lately that sometimes I forget how extremely difficult this actually is for him and how far he has come.

Let me just say that you can usually tell when a child is getting his port accessed because that is where all the crying and screaming is coming from. CJ had difficulty in the beginning but he has really learned to manage the anxiety of the port access. I talk to so many parents going through this and read about so many other kids on their care pages, and the port access is a huge issue for many of them. For some it is the needle being inserted into their chest. For others it is the large tape that will cover it all and stick to their chest only to have to be painfully removed later. But for all of them, it is the reality of what it stands for. They are painfully aware that they are about to receive medications that will in all likelihood make them sick, or tired, or weak, or immune suppressed. It is all the port represents that contributes to the tears and anxiety.

As his tears rolled down his cheeks and my heart broke, I held his hand and he squeezed hard waiting for it to be over. The needle went in smoothly only to get no blood return. We were sure the needle was in and the port was accessed properly because the nurse was able inject fluids into the port. Nevertheless, it would not show blood return when she pulled back on the syringe. So after three attempts, which means three separate needle entries into his chest, and switching to a one inch needle instead of a 3 quarter inch needle, it still would not work. They still needed blood to get his blood counts done so they decided to draw from his finger to get that started while they worked on the port and tried to get the blood flowing.

In an attempt to unclog the port, the the nurse got him up and out of the bed and had him doing stretches, and reaches, and touching his toes, and anything she could think of as she pulled back on the syringe trying to get the port unclogged and the blood flowing. Still no blood return! My anxiety was rising a little and I was trying not to think too far ahead to the "what ifs". Thankfully, CJ has great nurses that really care for him and are amazing at what they do so that helped me stay calm.




Since he was able to receive fluids in the port they could still use it to put him to sleep for the spinal tap and chemo injection into the spine. They decided to insert and IV in his arm while he was asleep so they could give him another chemo med he needed.

This is when I realized why it was so important they get blood return before injecting the chemo. If for any reason the chemo medication he was receiving leaked even a little because of a tiny hole in the tubing or inadequate access to the vein, it would eat away his tissue and flesh and leave a horrific wound. Needless to say or detail for you here, it was a nerve wracking experience for both me and the nurse injecting the chemotherapy medication directly into the vein and praying it was going in okay. She kept stopping and checking his vein again and again and she flushed it repeatedly afterward to assure it was in completely. I was never so happy for it to be over.

After the spinal, while he was sleeping, I was standing by his bed and looking down at him and suddenly it really gripped my heart to see him laying there with the wires and needles coming out of him and the monitors beeping and counting his breathing in the background. I have stood over him like this multiple times now so it is hard to explain what I felt and why this particular time. It was not like the first times when it was all so scary and new and overwhelming. It was different. I don't even think I can explain it adequately other than to say it just seemed to hit me at that moment all that he is battling to beat this cancer. He does so well in between appointments that it is easy to lose sight of it all. We spend so much of our time focusing on helping other families and kids in this battle, but when I stood over him this week it was like, "This is my son laying here going through this." I don't know. I know this is not making sense. Here, you stand over him and maybe it can better explain what I felt.........




Once it was over and the nurse and I could breathe again because CJ's vein did not blow up, I stood by CJ's bed and waited for him to wake up. I could overhear the family in the next cubicle as they received instructions about what the next two years of their lives would be like now that their 11 year old daughter was diagnosed with cancer. I just sat there and experienced it all over again like never before. This child will be on a very similar protocol as CJ, so to hear the same things being repeated that we heard those first days was eerily reminiscent.

I remembered what it was like and how overwhelming it all was. I could not believe I was standing there over a year later as another family was just entering the battle. I kept thinking, What can I tell them that will actually help? What would I have wanted to hear from another mom that day? What would encourage me? Did some mom in the next cubicle overhear us that first day and feel the same way? So I waited, and battled the feelings of inadequacy and temptation to 'mind my own business'. Instead, I introduced myself and told them about CJ and assured them it would get easier. I encouraged them to lean on their faith in God and each other not their understanding of cancer.

As I sat back down in my own cubicle I wondered if I was totally honest. Does it get easier? Could I honestly say that I would I describe today as easier than a year ago or just more familiar and routine? I might have to rethink my approach before I start the mentoring program of newly diagnosed families.

CJ eventually woke up and the nurse decided to inject some medicine into the port and see if it would unclog it. We would have to wait an hour and if it did not work he would have to have a port study done, which would included dyes and scans, to see what was wrong and if he needed a new port, so lets just say I really wanted this medicine to work. After a few tries throughout the hour it was still not working. At the end of the hour the nurse tried one more time. This time dad was at home praying for it to work. She tried and nothing happened. Then she pulled back again and there was the most beautiful flow of red blood I had ever seen. The nurse was happy! I was relieved! And CJ was ready to get it out of him and go home! As I told you way back in the beginning of this journey when we were first introduced to ports, I never thought we would be praying to actually see blood. Welcome to the world of childhood cancer!

By the time we left, we were exhausted....CJ physically and me emotionally. On the way home, CJ overheard me receiving some really sad news about his poppa Enzo and my uncle. He was listening intently but looking out the car window. A few minutes after I hung up, he spoke quietly, "You know mom, when I was young, I don't remember life being so hard and sad." He's only ten! That is when my tears started to fall!


_____________________________________

Prayer Requests:

Please pray for a huge surge in his blood counts so we can move forward with our cruise next week. Please pray for a safe trip free from infection for CJ and for continued function of the port. Please pray for CJ's Poppa Enzo! I can't even put into words what we are feeling and how sad we are and how difficult this has been.
Thank you for your prayers and support of our family. We are eternally grateful.

Monday, February 15, 2010

Two Sides of a Rare Coin

I apologize I have not updated the blog in so long and I am grateful to those of you who have emailed me asking for updates. I am so thankful you really do want to know how we are doing enough that you reach out and ask for updates.

I have been asking myself why I have not written more and more often. I have tried to make excuses like to myself like, I don't think people really want to hear all of this or; I don't know what to say; or even that I don't have the time now that we are running the non profit...but none of those are really true.

The truth is I am afraid of what I WILL say. The truth is, when I write....I feel. And I have been avoiding having to feel the words in order to express them. I have been feeling so much lately in regards to cancer, life, and death.

Having said that and having apologized for not updating more, allow me to update you on CJ.

First let me say, CJ is doing well physically although we had a recent scare. Or should I say 'cause for concern'. We recently went on a small camping trip to Jonathan Dickinson State Park. Dad and the boys have been wanting to do this for a while. You know the whole manly need to start fires and play with their pocket knives and sleep on the floor. No offense men! I grew up with all sisters and we camped all the time...only in a motor home. My father was a wise man. He loved to travel and camp. He had three daughters instead of three sons, so he bought a motor home and off we went. Not this family however. We did the whole tent thing. Needless to say, I envied all the other campers with RV's and generators running while we slept in the 30-40 degree weather.

Everything went rather well except CJ picked this particular weekend to start experiencing back pain again. It was so eerily similar to how this all began back when he was diagnosed. He would offhandedly say, "My back hurts, " and point to that same area where the tumors were found. Chris's heart rate would immediately increase and I would inwardly cringe knowing what it was doing to him. Not that I wasn't worried at all, but I am more rational in that area. After all, CJ did just sit a car for over two hour drive. My back was hurting, so why not his? But that did not compute so simply for dad! At one point he even wanted to pack up and go home. After reconsidering and calming down, we finished the two night trip and headed home. CJ's back pain has seemed much better ever since so that is a relief.

We took him in on Friday for counts and I spoke with the doctor about his back. She said it could be the spinal taps. I, however, disagree wholeheartedly! He has been getting spinal taps regularly for 17 months and never had lingering pain because of them. The last spinal tap was weeks before and this is the original tumor site so that can't be ignored.

Then the doctor said it could be residual from the original tumor. The tumor was wrapped around the lower spine at the base of the tailbone (hence the back pain). The tumor has left scar tissue and probably some minor damage so he may always be sensitive there when the weather changes, or he sits for too long, etc... "Like an old person," she described. CJ thought that was funny and eyed me as she spoke. Now he tells me he is an old man already.

Humorous or not, that explanation made more sense to me. I would still prefer some scans to reassure me further but they are not scheduled until September and I realize he does not need to be overly exposed to scans either without more reason. All those scans have lasting effects and risks that can cause difficulties later. So all things considered we are happy with that answer and will evaluate his pain and blood counts as a way to observe this.

His blood counts are back up so we are increasing his chemo dosing bit by bit. I must confess I had no idea that the 'maintenance phase' of his chemo would be so complicated and constantly changing. His blood counts are all over the board and we are constantly adjusting his dosages. I am so thankful Chris is so good at organizing all of that. He keeps track of the doses and times and makes charts to keep me from forgetting which is a MAJOR problem I have. Isn't that ridiculous? I actually forget to give my son his chemo meds! Should that not be the MOST important thing on my mind before anything else? Yet, I will get up and get busy with making breakfast, cleaning messes, taking calls, laundry, teaching school, dealing with a busy toddler or whatever and before I realize it...."Oh no! It's Monday and CJ was supposed to take this or that medication." There is a chart Chris has made for me to follow but somehow I still forget or let time get away from me too often.

For the most part, CJ is on track with his "treatment road map'. He will be entering Course 5 of Phase 5 in a couple weeks. This course will carry us through to September 2010 with the 'end of treatment'. Seven more months of chemo to go! I can't believe he has been on chemo for 17 months now.

You may be surprised but I really don't think about think about the end of treatment at all. I can't yet. Too much can change between now and then and I don't want to build it up for him and make all sorts of promises to him only to have them ripped away for any reason. So we wait, and we secretly hope but do not really speak about it too much. It is always a guarded subject. I almost asked him about planning a big end of chemo party but felt a grip on my heart that made me pull back. Not yet! It's too soon.


In addition to our family camping trip, we received a call the following week that there was an opening if we wanted to take it at a family cancer camp in Orlando called Camp Boggy Creek. We have been once before and we eagerly accepted and made last minute plans to attend.

This camp puts on family weekends and summer programs for families battling life threatening illnesses. This was Cancer Family weekend. As I said, we attended before but this time was even better in that we knew what to expect and therefore we were a little more relaxed. They assign family 'pals' to your family for the weekend and we had the three most amazing young women assigned to our family. What a blessing. Thank you Cory, Rachel and Julie! You are etched on our hearts forever.

I know these young women have no idea the impact they have on our family. None of them have kids of their own yet so I don't think they can fully appreciate what it means to take four kids out to play so mom and dad can sleep in a bit. Or stay in with the four kids and play so mom and dad can go for a walk or rock in a rocker. Or just be an extra pair of hands and ears and eyes to make the weekend that much more relaxing. They are so wonderful to all the kids and understand the gravity of the situation without acting like it. So appreciated!

At one point, while we were exploring the grounds, we came upon a small path that opened to very special place in the woods. It was very peaceful. Nestled by a large pond. Moss dripping from the trees. Benches lined up like a church facing a heart full of stones. Stones with names on them. Dates on them. I realized these were the names of kids who had attended this same camp just like us. Kids who are no longer with us. Their battle is over. C

CJ saw the stones and walked over. He just stood staring at them. I can't help but wonder what he was thinking. Does he think poor kids...or maybe...lucky kids but poor family. Or does he think, I wonder if my name will ever be on a rock hidden here in the woods. Or maybe he thinks nothing at all and just wonders about each one. What kind of cancer they had. How long they fought. What were they like. I took some pictures of him at this serene place and I will attach below.

Beyond that, the weekend ends off with a skit or song or dance performed by these kids with cancer and their siblings. And the family pals get right on up there and wear whatever silly costume the kids want them to and sing whatever silly song the kids want them to and do whatever silly dance the kids want them to. Most of these family pals are college students or recent graduates. They are there volunteering their time with these families. They are up on that stage doing what most of the world or at least people their age would probably consider making a fool of themselves. But these young adults know better and I envy them. I wish I knew at that age what they know and understand. They are no fools my friends. They are wise beyond their age I only wish it did not take me going through this to realize it.

During the skit as we watched these kids perform, I leaned over and told my husband that this show was more valuable than any opera or Broadway play you could pay to attend. You sit and watch a kid about 10 years old who still bears the effects of recent chemo treatments, who can't sing worth a lick, walk up to a microphone and sing 'THE CLIMB'. It is profound my friend. Mylie Cyrus herself could not out perform him at that moment!

In addition, we were also pleasantly surprised to arrive and find a family from Gainesville we have been wanting to see and spend more time with. We met them at Camp ROCK back in Sept. of 2009. They attend a sister church to ours. Their son Sam has a rare form of bone cancer called Osteosarcoma. He has an amazing story. He was diagnosed after CJ and has given his leg in his battle against this disease. It was great to see him up and walking on his prosthetic. He just had his last chemo treatment a couple weeks ago and his end of chemo scans are coming up soon. Please remember to pray for Sam to have clear scans! Here is a link to his site.

It is amazing to be with all of these kids. Some have been battling the disease for YEARS. Some for months. Some are at the end of treatment and some have just begun. Others, like us, are still in it. One thing that amazes me about cancer treatments is the complete variety of treatments. For example, Sam has a much more serious and rare cancer. His treatment was more intense than CJ's and required him to inpatient to receive chemo where CJ has a lot of outpatient treatments. Sam had higher doses, but a shorter overall plan. CJ has lower doses but a longer time of treatment. We meet some kids who have three months of HELL for treatment and then it is done. Or six intense months with lots of hospital stays. Then there are kids like CJ who have two ore three years of chemo with what I consider to be less toxic than some of the others. Interesting!

I am just pondering some of the things that sit on my heart and mind in regards to this whole world of childhood cancer. Attending camps like this open the doors of your mind and heart for such issues to enter in.

Spiritually CJ seems to be doing well. Emotionally, he is still digesting all that is happening to him and to his family. His poppa starts his first chemo today after 2 weeks of intense whole brain radiation and he has deep feelings and concerns for him. It is hard for him to see his poppa going through this, but he is grateful to be able to share it with him in a special way and answer questions his poppa has. We are baffled by all the endless complications and frustrations that keep arising in regards to Poppa Enzo's care.

Not surprisingly, CJ told me that he is shaving his head for his Poppa like others did for him. That really touched me. When others shaved their heads for him I don't think he quite understood it and now that it is someone he loves he wants to do it too. At only 10, he has been on both sides of that very rare coin!

For Valentines Day I will leave you with this....

"Greater love has no one that this, that he lay his life down for his friends." (John 15:13)
Not to challenge scripture in any way but please consider this....
Jesus laid is life down for His enemies. (Romans 5:10)
Is there any more amazing love than that?



Path leading to...


...church in the woods





CJ looking at the stones






Reading the names