Happy Halloween

Cameron has been looking forward to going Trick-or-Treating for months and when the rains came earlier today, I was so afraid he would not be able to get out. But thankfully, the rains stopped just in time for him to head out. He was Luigi this year. We put him in his wheelchair and he had an absolute blast going from door to door saying "trick-or-treat". I was so happy for him that he was able to get out and go.

After a really good weekend, he is starting to have some pain again. He's having trouble with his vision too. It just breaks our heart. As his mommy, I want so desperately to "fix" him, take this away, make it all better. But the reality is that I cannot do anything but stand by and watch. Hoping for a good day tomorrow.

A rough week...

It's a cold, raining day here in North Carolina and for the first time in days, I (we) actually slept.  This has probably been the roughest week to date.  As I write, I am the only one up in the house and I am listening to my little Cameron breath in and out over the baby monitor and wondering what today will hold.  Yesterday was probably the most miserable though.  After a very restless night on Thursday night with lots of pain and nausea, he suddenly woke up Friday morning, scooted the edge of the couch, and requested going for a walk.  It was rather strange as he hasn't wanted to "walk" in weeks but of course EJ took his hands and after a quick stroll through the house, he seemed satisfied.  I had to run to work for a few minutes and he said to me "mommy, I'd love to go to the mall tonight."  I smiled, told him we would, and off I went.  EJ called me around lunch and told me to come home immediately because he couldn't wake Cameron up.  I packed up and rushed out the door...so much so the Cary PD stopped me for speeding and had very little concern I was rushing home to my son (a matter I will take up at a later date).  For hours we sat by Cameron and talked to him, rubbed his head, tickled him, checked his eyes...no response.  Surely, I thought, he was nearing the gates of heaven.  Dr. G arrived around 6pm, kneeled down beside Cam and said "hey Cam" and like a light switch, he opened his eyes and looked at him, rubbed his little eyes, and then began talking.  EJ and I walked away, tears flowing...can't say they were tears of happiness or saddness...probably more like pure emotional exhaustion.  Sometimes it seems like we lose Cam over and over again when he goes through these spells and we prepare ourselves, only for him to rebound...until the next time.  I just cry out over and over...What Lord are you doing?

So with that, another weekend comes.  So thankful he is resting peacefully in his bed.  So thankful for a doctor who makes house calls.  So thankful for a little boy who loves his doctor like he does.  So thankful for a big brother who, without asking, had the strength to hold his brother's hand for hours yesterday and talk about their fun over the years.  So thankful for my husband who is the best daddy and most gentle soul I know.  So thankful I didn't get a ticket yesterday.  And most of all, so thankful for the assurance that on the other side of the pain and suffering, Cameron has heaven.  

"Do not fear what this day, or any day, may bring your way.  Concentrate on trusting Me and on doing what needs to be done.  Relax in My sovereignty, remembering that I go before you, as well as with you, into each day.  Fear no evil, for I can bring good out of every situation you will ever encounter." - a devotion from Jesus Calling

Sad...

Not much to write...I'm so sad today. Sad for a family who lost a beautiful little girl to a brain tumor this morning. Sad because I know my time will soon come. Sad because Cameron had a bad night and is hurting again. There are some things we will never understand on this side of heaven. Trusting the Lord knows best even though it is so hard on days like today.

Gotta love technology...

Late Saturday afternoon, Cameron woke up and wanted to go to the mall. He had seen a car at Brookstone that could be maneuvered with his iPad and his heart was set on it. So off we went. I have to say, it is the coolest toy and perfect for Cameron. He can sit in the recliner or in his bed and drive the car all around the house with his iPad. For a little boy who used to crawl around the floor for hours with his Hot Wheels, this is the next best thing. Gotta love technology!

Today has been a really great day...probably the best in a long time. He woke up in a great mood, ate breakfast, and immediately began playing with his new toy. He giggled as he ran his car into Connor and through each room via his iPad. Ms. Germano came over and was able to do school for the first time in a while. And as we were going down the road, he suddenly started to sing with the radio; a sound we haven't heard in quite some time. He made me smile as he said "it is a gorgeous day!" Truly every day is a gift and I don't think there is a soul on this Earth that understands this truth more than my sweet child. Who knows what tomorrow will bring but today, we had a great day!!! What more could I ask for?

Pretty good few days...

After a rough start to the week, Cameron has had some pretty good days.  He is still having pain in his leg but nothing as severe as Tuesday night/Wednesday morning.  We started him on a new medication to help his nerve pain and while it seems to be helping, it is making him sleep even more.  The balancing act of drugs to provide relief while keeping quality of life is challenging at times.  

A couple of really great things happened this week:  1) I was able to meet with a palliative care specialist at Duke who was amazing.  We spent almost two hours together discussing Cameron's history, current medications, and a plan moving forward to manage his pain.  YEAH!!!  For the first time in weeks, I feel like a plan is in place for my little guy.  2) One of the nurses who took care of Cameron when he was at Duke in 2008, and since moved away, was in town for a wedding and came by and spent the afternoon with us on Friday.  It was such a wonderful visit. 3) One of Cam's Hot Wheels friends wrote to say he was in the area and wanted to come visit and 4) My family, minus my brother, were all here for the weekend and while it was a house full, it was nice to have everyone around.  

As I have said many times, this journey is exhausting.  The ups and downs come suddenly and drastically.  I've tried to understand why God is allowing this.  Why not just heal him Lord, you can?  Why not take him Lord and remove him from this suffering, you can?  I cannot even begin to understand the why's or fathom God's purpose in all of this.  But as I was driving to work on Friday, Cameron's favorite song "The Everlasting God" came on the radio.  And while it brought tears to my eyes listening to it and thinking about how many times I have heard my sweet son sing those words, it was the end that really hit me between the eyes.  I've heard this song a million times, I have heard the ending a million times, but on Friday, God reminded me of something:

Do you not know?  Have you not heard?  The Lord is the everlasting God, the creator of the ends of the Earth.  He will not grow tired or weary, and His understanding no one can fathom.  He gives strength to the weary, and increase the power of the weak.  Even youths grow tired and weary, and young men stumble and fall; but those who HOPE in the Lord, will renew their strength.  They will soar on wings like eagles; they will run and not grow weary, they will walk and not go faint.  Isaiah 40:28-31

Horrible night...

Well this morning, EJ and I are running on empty. Cameron had a really bad night. He was in a lot of pain and just could not get comfortable to even sleep much. We were giving him everything we had to try to help ease the pain in his back and leg and nothing was helping. Frustrating is an understatement. But even in the midst of a horrible night like last night, I stand amazed at his character. Never does he yell at us, never is he angry, never does he question "why me?" Romans 5:3 says "...suffering produces perseverance; perseverance, character; and character, hope".

I found the following picture the other day from a few years ago. Cameron wanted to be Charlie Brown for Halloween in 2008...why?..."because I don't have no hair." That's my Cam...taking every aspect of this journey with cancer in stride and making the most out of it...all the while showing that smile to everyone he encounters.

Not a good day...

The pain has arrived again in Cam's left leg. It's been a hard day for him, and for us. As parents, you want so desperately to take away your child's pain and yet every time we move him, everything thing we do seems to make it hurt more. I want to just weep sometimes. And yet I am so emotionally drained that the tears won't even come. I was whispering in his ear tonight reminders of how much Christ loves him and the joys that await us once our time here is over.

"Cameron, I cannot imagine what awaits us in heaven"...Cameron nods.
"Cameron, do you know how much Jesus loves you and that He will make you new again"...Cameron nods.
"Cameron, do you know how many people have learned about Jesus through your life"...Cameron nods.

Sometimes i wonder if he knows more about life, and death, and Jesus' love and grace and mercy than I do? He seems to take this battle in stride. I cannot count how many times we have been in the car and the radio would play "I Can Only Imagine" and I would hear his little mousey voice singing the words. Never did I think he would experience heaven before me. I constantly thank God for His grace to get us through another day and then at times, I look in my precious child's eyes and wonder why the pain is allowed. Please continue to lift Cameron, and our family, up in prayer.

No complaints out of me...

I'm not a superstitious person but sat down to update the blog on Friday night and ended up not doing so because it seems each time I write "we have had a good few days" something crazy happens. Totally desiring a calm and peaceful weekend, I held my update until tonight and I am happy to report that we had a pretty uneventful weekend. And lately, uneventful is blissful for the Jackson's. Even though Cameron slept most of the day on Saturday, he wasn't in a lot of pain which is a complete blessing. And while he slept, I continued to decorate my house for Christmas...in October. It makes me smile each time I walk into a room with shorts on and see the tree standing there!!! Today, Cameron slept most of the day away but when he woke up around 3pm, he was ready to get out of the house so we went to the mall and walked around for a few hours and then stopped by Target where he found FOUR new Hot Wheels. As I type, he is still awake and anxiously waiting for an Ebay auction to end; he can't sleep until he knows he won the car! Haha!!!

So another week passes by and we continue to put one foot in front of the other. As with Cameron's pain, our emotions are up and down too. But I just have to say, I am delighted I serve a God who understands my fears, worries, and anger at times and yet faithfully continues to pour out grace sufficient to get me through each passing day. Love to you all...

Words are inadequate sometimes

One of the things over the past few years that has wowed me, and at times been difficult for me to accept, is the generosity and love people have for my family. You see, I'm a "do'er". I love hearing of a need, or want, and making it happen. My friends can attest to the fact I often show up with an out of the blue gift, something they have mentioned in passing they want...I just love getting the "what is this for?" look! But being on the receiving end is not a comfortable place for me. I'm not sure why. But as we have continued to ride this roller coaster with Cameron, I have realized there are so many people in this community who love our sweet son and want to do everything possible to help us through this journey. And while sometimes not the easiest thing for me to accept act of kindness, the Lord has really convicted me how I would be robbing people of their joy by not graciously accept their love. After all, if the shoe were on the other foot, I would be that "do'er" to help in any way possible.

Last night, we were sitting in the living room and heard the doorbell ring. When I opened up our front door, there were close to 100 people standing in our front yard singing Christmas carols. They had read on the blog that at Cam's request, we had put our tree up, and wanted to spread the Christmas cheer further. I was speechless, which is rare. I went and got Cameron and rolled him to the front door. At one point, I looked down and saw his little foot bouncing to the beat of the music...something I haven't seen in a long time. He was captivated. I guess they sang for 20+ minutes and then, the kids, many of whom are his classmates, began bringing him Christmas gifts. What does one say? How does one respond to such? The tears are rolling down my cheeks as I type about it a day later. In a day where some don't even know their neighbors, Cam's journey with medulloblastoma has rallied an army of prayer warriors and community of children eager to simply "love" someone in need. Words are inadequate and "thank you" seems small. I am overwhelmed. Thank you Lord for your many blessings!

A bit better day...

After a VERY long day yesterday and night, things seem a bit better with Cameron today. We finally got his nausea and pain under control which brought his spirits up. After eating a bit of breakfast this morning, he was anxious to head to Target for Halloween and Christmas lights and so we did. As he was getting out of the car at Target, he says "listen to the beautiful birds"...I love that kid. In the midst of hell on Earth, he still sees the beauty of every day. And yes, for those of you who are wondering, we did put up one (I put up about four every year) Christmas tree today for Cameron. Why?...not because I think things are imminent but because why not. He loves Christmas, he loves every day, he just loves life. And we love him...so up went the first of many trees!!! And I couldn't be happier. Is Cameron out of the woods...no! But today was a better day and after all, today is all we are promised. Love to you all...

Been a tough day

I woke up this morning excited about discovering Cam's favorite putt-putt course in Myrtle Beach is actually handicap accessible (something I never had to look for before) and as EJ and I were thinking about when we could go, we heard him over the monitor crying in pain. Being as Cameron is a child who NEVER complains, when he does, it is for a reason. So today has been a really tough day. He's had a lot of pain, not really in his head but in his lower back and left leg. We are assuming there is swelling/pressure on his spinal cord which is delivering the agonizing pain. We've again thrown the arsenal of pain meds at him without much relief. He's been a bit nauseated today as well so that complicates things a little more. If we cannot get things under control, we may end up at Duke for IV meds. Praying it doesn't come to that.

But as always, in the midst of such a day, there comes a "Cam story". At one point, he woke up insisting that we go to Hallmark because the new Christmas ornaments came out today. How can we deny such a request. So we jumped in the car, puke bucket in tow, and headed to Hallmark. He started feeling bad while we were there but he got his ornaments. :-) And you know what, I think we might put our Christmas tree up tomorrow. The neighborhood may think we are crazy but I don't care; if it makes Cameron happy, we are going to do it.

Sleepy little Cam...

Another week passes by...another weekend approaches. As I type, he is not yet awake; an anxious time for EJ and I because we never know what we are going to get when he does open those big blue eyes. Yes, that is our life...living moment by moment. He seems to be sleeping a lot these days. He usually wakes up between 11am and noon, many times with a headache, and then quickly retreats in the early afternoon. The good thing is that when he is up, we usually have some good moments...the bad thing is those moments seem to be getting less and less. But he still never complains. Just yesterday, he was laying back in the recliner with a headache and I asked him, "Cameron, are you sick of these terrible headaches". He cut his eyes at me as if I had asked the most stupid question ever and responded "no, they don't bother me too bad." What? I know sometimes he hurts so badly he can't even open his eyes...how can he respond in such a way? I thought of the following verse:

And He has said to me, "My grace is sufficient for you, for power is perfected in weakness." Most gladly, therefore, I will rather boast about my weaknesses, so that the power of Christ may dwell in me. Therefore I am well content with weaknesses, with insults, with distresses, with persecutions, with difficulties, for Christ's sake; for when I am weak, then I am strong. -2 Corinthians 12:9-10

How can a little guy delivered such a blow in life remain so strong? How do EJ and I continue to put one foot in front of the other? HIS grace is sufficient.

Sadly I will say, verses like the above were lessons I learned in Sunday school as a child that just seemed like "good theology". And even as an adult, I would listen to a sermon and nod my head in agreement with everything the preacher was saying, subconsciously hoping to never put that theology to test. The God on the mountain was just fine for me; it was peaceful, comfortable, and easy. It's incredibly simple to believe God is a loving God when things are perfect in life...its quite the contrary when life as you know it is crumbling. I've struggled with trying to understand God's plan in this for years and have not heard or seen why and am beginning to accept that I may never get the answer I long for. After all, even if He revealed His plan to me, would that make this any easier? But what I do know is that the above is true. I am so weak, so incredibly weak and yet I'm the strongest I've ever been in my life!!!

Oh Mr. Cameron...what are you doing?

After a terrible start to last week, Cameron seemed to have turned the corner around Thursday. He woke up happy and started eating and drinking again. Friday was the same and yesterday, we had a great Saturday together. He woke up around lunch and we all watched the University of Georgia play a little football. The weather has turned much cooler here in NC so we put him in his wheelchair and the four of us went for a nice walk around the neighborhood. Cameron loves to look for birds, especially cardinals, so we did. I think he was super excited to just be out of the house for a bit and it was so nice to just do something together...just the four of us. But these good days have left EJ and I, and his doctors, wondering Mr. Cameron...what are you doing?

We had originally planned for a MRI on October 3rd but have since cancelled. At this point, I know what the scan will say and putting him through such an ordeal is simply not worth it. We have also decided not to have his port replaced. I had a good conversation with Dr. G last week regarding the many ways we can manage his pain without a central line and I feel we are covered. I had prayed for clarity about what to do regarding his port as I was very uneasy about putting him under anesthesia with the fluctuations in his intracranial pressure; I am at peace with the decision we made to not have his port replaced.

This morning was the first time in weeks I have been able to make it to church and how wonderful it was to be back there. I wish I could adequately explain the transformation in my spiritual life since this journey with Cameron began. To say I have openly and graciously accepted this heartache with a "whatever your will Lord" would be a lie. But I don't believe He requires that of me either. Anyway, I left feeling refreshed, alive, and then I received a call from EJ that Cameron had another terrible headache and I needed to hurry home. So again I wonder Mr. Cameron...what are you doing? Lord...what are you doing? But Lord, oh how I love you and your promise that you will never leave us, even through the darkest of days.