Friday, April 24, 2009

The Other Side of the Bed


CJ had an appointment for a Spinal Tap and Chemo on Friday. Although he has had to go in for blood counts every Friday and take multiple medications at home, this was the first formal appointment in 28 days. I don't think he has ever gone that long before without getting his port accessed and having a spinal tap before, so I was anxious to see if the distance between appointments would create more or less anxiety for him. I think that will have to remain to be seen since the weekly counts appointments are not leaving enough distance between visits to really tell.

Although he was nervous the night before, scared in the morning, and highly anxious when they accessed his port, we were grateful to see a greater trust and leaning on prayer. We literally prayed him to sleep on Thursday night, so he would be able to avoid the panic that was threatening to consume him. Then Friday morning I prayed him awake and we got him ready to go. When the panic and nausea set in as they began to access him, again we prayed.
As I stood by his bed while he was accessed and watched him work himself up to the point of almost becoming physically ill, I couldn't do anything but pray. I can't stop it, I can't make it end any sooner, I can't explain it, I can't do it for him. I can only pray. I really don't know what else to do anymore, except pray. I feel completely powerless over the situation except when I am in prayer about it. Maybe that is how it should be. I'm honestly not sure anymore.

After being accessed, we discovered that due to the decrease we made in his medications when his counts were low last week, CJ's blood counts responded this week by increasing beyond what they should be. Therefore, once again, we are gradually adjusting the medications he is taking at home until they find the cocktail that works for him and keeps his blood in the appropriate ranges. This is difficult because although the doctors are looking at numbers on a printout and adjusting prescriptions to influence those numbers, I am looking at my child and administering actual medications into his little body. This is really a daily surrender for me. The longer this continues and the better CJ seems, the harder it is to continue with the protocol. There is a temptation inside of me to say, "Enough is enough! He is better now and we will handle it from here." And yet, wisdom, or fear(it's hard to tell which sometimes) keeps me right where I am continuing down a dimly lit path that is out of my control.

As for CJ, he is really looking forward to a time when he won't have to go in every week. Even though he only has to have a spinal tap and chemo once every 28 days during maintenance, if he is going in weekly for blood counts it really does not feel like a break to him. Understandably, in his mind, if he is coming in and they are poking him in any way, shape, or form, then it is not a break. The sooner his blood counts level to within the appropriate range, the sooner he can stop coming in weekly for counts. Please pray that this last adjustment will be adequate to achieve that.

I, on the other hand, was shocked to find that I have had difficulty adjusting to being away from the hospital so much after being there so regularly. I know it sounds awful and it is hard to explain accurately what I was feeling. I suppose I feel more...... purposeful, (for lack of a better word).....when I am there. I am somehow more aware of life, feel more productive, and more humbled there. As you know by the things I have shared in previous posts, being there has often been difficult and extremely painful at times so these emotions were unexpected and unprepared for. I expected nothing but relief and was surprised to find confusion and restlessness in my soul. I am not sure I am at a point where I can verbally explain the jumble of emotions that this phase has brought on. I think I am still trying to make sense of it all myself. However, I did quickly discover how selfish this was though through an experience I had this week.

I actually went back to the hospital on Monday with a group of 10 of CJ's and Allie's friends. We volunteered with the children from the 4th floor (where CJ was inpatient) and with the kids in Pediatric Ambulatory (where CJ receives treatment). We made blankets and decorated pillow cases with them and offered a distraction from their treatments. It was rewarding to be there and do something so simple and yet so profound. I really thought we were there to serve them by making the day just a little brighter as they are going through a difficult time but I found it was also sweet medicine to my aching soul.

This experience allowed me the opportunity to be 'on the other side of the bed' for once. I was not there as the mother of a child receiving treatment, but offering comfort from a mom who knows what it is like to stand on the other side of the bed.

One bed I got the privilege to stand by was the bed of a young boy named Jacob. I have seen Jacob many times because he has been there three days a week for the last year and a half to receive dialysis. Jacob can't leave his bed when he is there so we came to him. Jacob's mom told us that he is finally getting a kidney transplant next week and will spend the next 100 days minimum in the hospital recovering. As she spoke, I began to feel terrible for the feelings I had been having about being away from the hospital. I realized she would give anything to not be there three days a week for the past year and a half let alone every day for the next 100 or so. As I stood by this boys bed and spoke with his mother, I was also reminded of CJ's friend Jia Long who is still in a hospital in North Carolina recovering from a Bone Marrow Transplant. He has been there since January and is alone with his single mother who has not one soul of family in the United States. No husband, no family, no friends, no home, no job, no insurance, and does not even speak the language of our nation. How selfish of me to think I miss being at the hospital for how it makes me feel, when I should be nothing but relieved with the distance and healing we have been blessed to receive. Needles to say, my heart of selfishness quickly turned to a heart of gratitude and I became determined to give thanks and seek joy in all circumstances from now on. I gained a lot from the perspective offered from the other side of the bed.

"Be joyful always; pray continually; give thanks in all circumstances, for this is God's will for you in Christ Jesus."
(1 Thes 5:16-18)


Thank you for your prayers. CJ is doing well with the medication adjustments and we will go back this Friday for blood counts to see if this last adjustment did the trick. Right now we are in need of prayer for protection of a nasty cold that is making its way through our home. It began with me and now the two little boys are dealing with it. We are trying to keep CJ from getting it and trying to keep mommy from the guilt of bringing it into the home in the first place.

I also want to share with you a website CJ's story was added to. It is a program a mother from the hospital recently began. It is called Send Kids the World. Please check out the site and read the idea behind it and see how you or someone you know may be able to send kids the world through postcards. If you, or someone you know, live in different countries or unique locations in the United States, or if you travel on vacation and visit historic sites, you can send a post card to a sick child who is unable to see these places for themselves.

The web address is www.Sendkidstheworld.com.
Check out CJ' s page and sign up to send postcards.


9 comments:

AshleyOrtega said...

CJ..
I've said this before, and I will continue to say it, You are one person I will always look up to. It's weird to hear from someone who is older than you, but if I had to be in your shoes right now.. I would have given up. You have been and continue to be such a strong boy and such a warrior in this battle. Your trust and faith in God is incredible and admirable. I will continue to pray for you, and your family. I know you will conquer this battle and in the end be a WINNER! You are an amazing kid. Keep doing what you're doing and most importantly leave it up to God.
Sending Prayers your Way,
Ashley Ortega

Kevin Abegg said...

Dawn;
As I read your words this AM, your thoughts on "Purpose" echoed in my head (whether that's because my head is empty this early or because it took an echoing repetition to get my attention I can’t say). As Claudia and I consider future occupation, ministry etc, the concept of purpose sticks with me in a haunting sort of way. What is my purpose in the ministry I’m currently in and what is the purpose God has for me in the years to come as His follower, a husband, father and then all the other positions each one of us have been given. I still wrestle with that some times in faith, some times in sinful fear but the verse that keeps coming back to me is Proverbs 3 specifically the well known verses 5 & 6:
Trust in the LORD with all your heart,and do not lean on your own understanding. In all your ways acknowledge him,
and he will make straight your paths.
You and Chris have exemplified trust and faith in so many ways over this past year of your families journey, and have been an encouragement and example to Claudia and I. It’s been a season of intensified focus of purposes for the both of you (as well as the whole family) in caring for CJ through this illness. In faith we pray that that this specific focus can lessen through the full, complete and lifelong healing of his body from this cancerous attack, and that in the transition to a new (or back to a normal) rhythm and focus, you can sense the Lord’s leading and grace just as strongly. We love each of you and will continue interceding for CJ and for the Lord to provide for your every need as a family. God bless you all!
-Kevin (for the Abegg family).

Enzo said...

Dawn,

It makes perfect sense to me all the feelings you have been having. By going this week to volunteer and bring the other children to make blankets and stuff is a good way to give back even during your time of need. I pray every day that the medications will soon be calibrated enough to give CJ a time out in between the scheduled 28 day treatments. I understand how it goes against everyting in you to continue this massive amount of pills but thank God this protocol is proven and has a pretty good track record. They are not trying to overkill. They are simply tring to do all that it takes to heal CJ completely.
I remember Jacob and I remember his Mom so well doing paper cut-outs by his bed just to entertain herself. I said something to her and she told me she practically lives there so she did what she could to pass the time. I remember her hands were shaking like early Parkinsons or something, I wasn't sure, and the little girl was there the same day with the trach and it was hard for her and I looked at CJ and was grateful that he could walk in and walk out that same day.
We love you guys and even though the comments seem to have dwindled I know that your writing is important to many readers that never post and that God wants this diary of faithfulness for you and your families future.
I love you.
Mom

Janet S said...

Hi, Dawn. You must've had some deep intimate times with God from the time you were given CJ's diagnosis. I know you were close with your heavenly Father before this happened, but you've shared a special consistent intimacy with Him in the last few months. Once we have that, we want it ALL the time. How selfish is that? No, it's not. He wants the same with each one of us.
As you say, "I am continuing down a dimly lit path that is out of my control," you are not on this path alone and yes, it is out of your control....but better still, He is in control. All you have to do is stay on that narrow path and follow Him. Continue to meet with Him and speak with Him.
Thank you, Jesus, that we are not alone. Because of your love for us, we have the power and help of the Holy Spirit. I pray for the doctors to find just the right cocktail of meds for CJ's body and that as he continues to visit the hospital to check on his counts, it will be a time of peace as he remembers that You are in control and carrying him through this journey.
We love you, Lord, and have so much to be thankful for!
We love each of you, George family, and continue to pray for protection and healing for CJ, and for protection from colds and viruses for the entire family as we know that you all still have to be very careful concerning this.

Romans 15:13
May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit.

Sonia said...

Dear CJ, Dawn and family. I´m happy to hear from you againg. Now is the long term maintenece, it seems to be easer but the hard part is not de frecuency but the long time it takes. As you show, you are learning a knew way of living with it. We keep thinking and praying for all you ask for.
Love,
Sonia, Andrea, Ale and Antonio

Anonymous said...

Dawn,

Thank you so much for the update. I think Mr. Abegg had it right with the verse "Don't rely on your own understanding but Trust in the Lord with all your heart and soul..." I have heard that God uses us most when we are unaware of how He is doing it. It seems to me like you were definitely serving a God given purpose that day, even if you felt like it was because "you missed the hospital". Please don't let guilt seep in on your gratitude. You do not have to feel guilty because you feel grateful. That is a lie from the enemy we too often believe. CJ is an amazing boy and we are all learning so much from him and the whole George family. I can't wait to get the hard cover, "How to attack Cancer the Christian Way" or something like that by The George Family. I truly believe God has used you and your family to reach many and has opened a door for Christianity to be linked to no believers who have cancer. Keep walking in obedience and follow Him even if you are unsure sometimes, scared, or in pain. You being fully surrendered to just prayer and nothing else is EXACTLY what He wants for you. He wants to be your ONLY comfort. I love you sis. Just by updating this blog in the direction towards Him is more obedience to HIM than most of us can testify to. You actually not only listen to Him but follow through.

Love,

Jacks

Anonymous said...

Hi Dawn and CJ,
I was glad to see a new post a get an update. With every new stage for CJ comes a new stage of feelings and emotions. We pray hope that CJ's counts were just right on Friday and that he and all of you continue to get stronger and stronger. We continue to pray and keep you in our thoughts

love, Nicole Ana and Alberto

Anonymous said...

Dawn since you have been studing David I would love to share with you one of his LOVE PSALMS to the LORD. I love this one, it flows like beautiful poetry, and settles into my heart. I feel exactly like David did. Psalm 63:3-8 Because your love is better than life: my lips will glorify you. I will praise you as long as I live, and in your name I will lift up my hands. My soul will be satisfied as with the richest of food; with my singing lips my mouth will praise you.>>>>>>>>>>> I pray these verses will bless you richly. I know you love the Lord just like these verses David penned.God be with you all, you are lifted in prayer.

Alexa said...

Dear Chris and Dawn,

I am thinking of you, CJ, and your family today. Chris, they say that behind every good man there is a great woman. I think thats true more than once, most definitely true in this case (shameless biased opinion :0)). I think that its also true that behind every good woman, there probably is a good man....Chris, you ARE that man(also my shameless biased opinion :0). Dawn, what a great mom you are and what a brave son you have. Of course I can't stop there, because Allie is also so very brave and your younger sons are little warriors. I have been impressed more than once, how Allie can just fill in for you without skipping a beat. There has been some serious training there :0)

As I was reading this blog again, I was thinking how we don't really know where this journey of parenthood will take us. Its such a rich journey. Such joy, such love, such tears...

What an awesome wise God we have! He doesn't tell us everything all at once.

John 16:21 A woman, when she is in labor, has sorrow because her hour has come; but as soon as she has given birth to the child, she no longer remembers the anguish, for joy that a human being has been born into the world.

None of us knows how long we have here. In a sense, as believers, we are all as a woman in labor. Our "real joy" is yet to come, but come it will :0)!

My prayer for you and your family today, is that we may keep our eyes fixed on the joy to come. May we rejoice today, because our heavenly Father has blessed us richly in Jesus Christ. May we rejoice today. because we have a hope that cannot be taken away.

I love you my friends,
Alexa and fam.