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.
(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.
Check out CJ' s page and sign up to send postcards.