I took Jack in yesterday to get his blood counts tested to see if he was up for beginning the next section of Delayed Intensification that was scheduled for Monday. Turns out he has an ear infection! That morning, he seemed to be fine, and then about an hour before we planned to go, he was grabbing his ear and crying more than normal. I suspected something, and I am so glad I took him in. So in addition to catching an ear infection before he got a fever, we found that he also does not have an ANC count anywhere near close to starting the next phase. His ANC has to be greater than or equal to 1,000 to begin. And well, his is around 300.
So we will be going in Monday for a chemo in his spine, but unless his counts go way up by Monday, we will be postponing the next phase as long as another week or just a few days - which ever scenario get his counts high enough to proceed.
While we were at the clinic yesterday, they went ahead and gave him IV antibiotics to treat the ear infection, and he already seems to be doing better with that. And each day he is sleeping a little better and is happier, which means less and less of the steroids are left in his system.
The past two weeks have been tough for Jack and tough on me as well. The second week on steroids really effected him emotionally. This time he was all tears and was very quick to get angry. There were moments where he was his joyful self, and he would have bursts of energy, but generally, all he wanted to do was watch movies and sit and eat. There a lot of hot dogs for breakfast, ramen noodles for a 9:30 am snack, mac n cheese for lunch and fishie cracker all day. He gained about 2 or 3 lbs in two weeks. So he has a round little face and belly again!
He also was not sleeping much these past two weeks. it got to be so bad at nights, that Jordan put a mat on the floor of the boys room, so that he could just be there all night with him and get as much sleep as possible. Jack wasn't taking naps, and would not go to bed until 11 or 12 at night, only to wake up again at 2, and 4 and 5 and want to start the day at 5:30 am with Toy Story and noodles! Part of this lack of sleeping was the steroids, the other part was that he has been having constant diarrhea for the past few weeks, and he would wake up in the middle of the night with tummy aches and needing diaper changes. Turns out he had gotten a bacteria called c-dif (which is very contagious). So he has been on some kind of antibiotic for the past few weeks and is still on them.
With all of this came the beginning of hair loss. Last Sunday morning, his hair began to fall out in larger chunks than we had seen before. I knew that it was all going to come out soon at this point. And we had almost been waiting for this day to come. We have been so blessed to have him look almost normal for 6 months of this treatment. By Tuesday morning, his hair was everywhere and we were all having scratchy throats from it being on everything. I would change his shirt and 40 hairs would fly out onto me, and he would have hair all over his collar and face. I knew it was time to cut it.
Tuesday morning, we cut what was left of his hair (which was still a good bit) and then buzzed it so it looked even. He seemed so much happier once we cut it. I gave Jordan a hair cut and Tyler and Dylan, so he wasn't the only one getting his hair cut short. He looks adorable, no surprise there. But it is still hard for me to see him bald. It is a reminder, as if we needed one, that he is sick. There are moments when I do not even see him as bald or think of the cancer when I look at him, I just see my sweet baby boy. Those moments are becoming more and more frequent as I get used to seeing him bald, and especially as the steroids come out of his system.
We have been spending most days at home. I just do not want to risk Jack getting sick. I know that living in a bubble is not good for anyone, but I also want to protect him as much I can and not put him in risks way needlessly. It is a fine line we walk, between being wise and cautious and seeking to trust the Lord and walk in faith. I do not feel like we are fearful, but more wanting to be controlling of all the circumstances around me, and I am realizing that only God is in complete control. So where wisdom and discernment come into that and faith, well that is a work in progress!
I have not been to church in 5 weeks, and have really missed worshiping the Lord as a congregation. The Lord has been sustaining us and giving me hope in Him. Yet it is hard. I hope to get to go to Cov Life tomorrow morning. But even if I do not get to go, He is near during this time. I have never felt the nearness of the Lord more acutely. It is amazing how his grace really practically sustains. Oh how I need Him daily.
We are going in on Monday for a spinal tap and to get counts. We will see what that tells us and when we can plan to move on to the next batch of chemo. Please pray the Lord protect Jack from illness during this time where he is susceptible. Dylan has a cough now and runny nose, so I am disinfecting the house like a crazy woman and trying to keep the boys from kissing the baby! They love their baby brother, but I do not want a silly cold to send us packing for the hospital if we can help it! I can do all I can, but God is ultimately in control, so we are asking the Lord to protect him! He is faithful, and no matter what this next few days/weeks look like, I know we can trust in him, our help in times of trouble.
I cry aloud to the Lord; I lift up my voice to the Lord for mercy. I pour out my complaint before him; before him I tell my trouble. When my spirit grows faint within me, it is you who know my way. I cry to you, O Lord; I say, "You are my refuge; my portion in the land of the living."