Little buddy is doing OK. He has a full head of hair again, which has grown back in much more curly than before, and a little different shade of blonde. I miss his hair short, and since it was becoming quite bushy, I gave him a little hair cut yesterday. I think he looks adorable, no matter his hair! He has grown quite a bit too. I think he has gained a couple pounds over the past year and has gotten taller too.
Since he got his port put in back in October, he has has not had one fever or infection in his line. This is amazing! Just goes to show that the likely hood of the tube he had before being the culprit for so many infections in the year prior. We have enjoyed many baths and spontaneous activities we were not able to enjoy before, due to the fact that we had to keep his tube dry. Life has become more normal for all of us in a lot of ways that one would normally take for granted!
The latest things were are working through are getting his meds to the correct dosage while he is in this last stage of his treatment. This "last" stage will last 3 more years, and he will be on low dose Chemotherapy every day of it. He takes various chemotherapy by mouth everyday. And we go into the clinic one time a month for IV chemo. For the last 6 months, his counts have been WAY too high. The goal of this long term maintenance, is to keep him immune suppressed enough that the cancer cannot grow back, but not so much that he is at constant risk of sickness. The number we are shooting for is between 1,000 and 1,500. For the past 6 months he has ranged from 4,000- 7,000. Then, just this past month, the Dr. upped his chemo dosage by 25%.
Leading up to this change in dosage, I have really been wrestling with fear. Mainly fear of relapse of cancer in Jack. It has been a battle, not one daily, but mainly when he would go in for a blood draw and we would find out again, that his counts were too high. Although the Dr.'s reassured me that this was totally normal, my heart and thoughts were hard to reign in. I read so many great truths during these months that really encouraged me. And it was also during this wrestling, that I again, learned how to lean on Jordan in a deeper way. I have often withheld fears, trying to figure my way out on my own. The Lord has kindly been showing me that this is not going to work! He has given me a husband who is strong and wise, and gentle... who cares for me well when my soul is troubled. Another kindness from the Lord to me.
The past few blood draws, his counts have been getting lower and lower, the last one being just this past Friday was 860. This was also accompanied by a very difficult week of multiple visits to the Dr., and ear infection, a mild case of jaundice (which has given his a yellow look and well, an unhealthy appearance), a middle of the night ER visit, and many oral medications added to what he already takes, and a mystery virus that has wreaked havoc on his body; giving him mouth sores, and aches and pains all over his body. With his counts being as low as they are, he is tired all the time, laying around the house. That alone has been hard to watch.
So, here we are today. Little buddy is exhausted most of the day, and all he has been wanting to do is lay around and be held. Even though he is on steroids this week, it mainly seems to be affecting his emotions (which are all over the place, but mainly in the crying and whining side) and his appetite, and not giving him the energy boost we had hoped for. It makes me wonder how much lower his counts have gotten since this past Friday. We go in this Friday for more blood work. Each time we go in, he is miserable, as he hates the port access where they poke him with a needle... But he is brave, and recovers quickly, especially when I bring lollipops.
To say that last week was a little on the hellish side for us, well, I think would be accurate. Between the lack of sleep and Jack being up a lot at night, the tired and sick boy who is often in pain with the mouth sores, and all the meds he has been on... Well, we are grateful it is a new week, a new day, with new grace. I read this a little while ago in Morning and Evening by Charles Spurgeon.
“I have chosen thee in the furnace of affliction.”
Isaiah 48:10Comfort yourself, tried believer, with this thought: God says, “I have tested you in the furnace of affliction.” Does not the word come like a soft shower, assuaging the fury of the flame? Yes, is it not an insulating armour, against which the heat has no power? Let affliction come—God has tested me. Poverty, you may stride in at my door, but God is in the house already, and he has tested me. Sickness, you may intrude, but I have a balsam ready—God has tested me. Whatever happens to me in this vale of tears, I know that he has “tested” me. If, believer, you require still greater comfort, remember that you have the Son of Man with you in the furnace. In that silent chamber of yours, One sits by your side One whom you have not seen, but whom you love; and even when you aren't aware of it, in your affliction He prepares a bed and smoothes a pillow for you. You are in poverty; but in that lovely house of yours the Lord of life and glory is a frequent visitor. He loves to come into these desolate places, that he may visit you. Your friend sticks closely to you. Thou cannot not see him, but you may feel the pressure of his hands. Can you not hear his voice? Even in the valley of the shadow of death he says, “Fear not, I am with you; be not dismayed, for I am your God.” Remember that noble speech of Caesar: “Fear not, thou carriest Caesar and all his fortune.” Fear not, Christian; Jesus is with you. In all your fiery trials, his presence is both you comfort and safety. He will never leave one whom he has chosen for his own. “Fear not, for I am with you,” is his sure word of promise to his chosen ones in the “furnace of affliction.” Wont you, then, take fast hold of Christ, and say—
“Through floods and flames, if Jesus lead,
I'll follow where he goes.”
If you think of it, please pray for our little buddy. Pray that this virus would quickly pass through his body. Pray that his counts get to a good level. Pray that he would get rest at night, and that he would experience the nearness of the Lord. Please pray for us as we care for him, and for us to continually trust in God for all of this.