Welcome

Thank you so much for taking the time to visit our family blog. This may be your first visit here, or you may be a friend from across the globe, or family that we have just seen. Who ever you may be, thanks for taking the time to read about our little family, and all we are learning on this adventure the Lord has called us to live! Here you will find, the random thoughts, funny stories, prayer requests, and the journey our family and Jack is on with his battle with Leukemia.

.at the park.

We went to the park as a family on Monday. We were hoping to get to ride the train at Wheaton Regional, but forgot to check and see if the massive storm we had on Sunday would hinder this outing. We packed up and headed out, only to find half the park covered in downed trees. BUT we had fun on the playground. Jack tires pretty easily, so it was not a long visit, but it was fun. I love my boys!


Jack wanted to put his hat on the seal. Apparently, the seal needed some shade.


I think Tyler was pointing to some trees that had fallen down. But this is not that foreign of a pose... Tyler trying to be the boss and Jack just being Jack.


Love how he is so content in the stroller, chewing on my key holder.

Love my babies!

.8 months.

Where has the time gone?? I cannot believe this little squirt is already 8 months old! So much has happened developmentally with him the past two months! Here is a quick recap: He is crawling like crazy, he is pulling up and standing most of the time, he eats solids like there is no tomorrow, and he JUST started taking a bottle!! He has two big brothers to keep up with, so I guess that is why he is always on the move. No teeth yet, but some serious teething and fussiness going on here.

He also got a hair cut, around the same time we cut Jacks hair. He looks so different to me, but so adorable! He is still on the tiny side of things. He is in size 6-9 month clothes, but I think he could still fit into some 3-6 month stuff. He is so tiny, which makes it hard to believe he is already 8 months old.

Oh I love this little rascal.

.counts.


Jack went in for his spinal tap yesterday. All went well. He did great. We did find out though that he did NOT make counts. His ANC is 250. As I said before, it has to be at least 1,000, so he has a lot of rebounding to do before we can proceed. So, we will check again on Friday to see if they rise. As much as the rest between cycles is welcome, we do not want to delay too much in getting this phase over with! Thanks for the prayers friends!

.a delay.


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.

Psalm 142:1-5
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."

.evening at the park.

We celebrated Jack being done with steroids this week by a trip to Rita's for ice cream and a little visit to a playground in our neighborhood on Tuesday. Although the effects of the steroids are just now beginning to show signs of wearing off, it was a happy day, to not have to give him those yucky meds anymore. We hate to see what they do to his poor body, and so Monday morning, when I told him he only had to take one med instead of 4, he was so happy! So we celebrated best we could!

Tyler was thrilled of course, any excuse to get ice cream is a joy to him. Pop-pop came with us for the ride and fun. We didn't stay at the playground long, as Jack was not feeling well, but we had fun and I took some pictures.











Thanks for all the prayers friends. I will post an update on how things are going and what to is ahead. We are so grateful for your support and cannot imagine walking through this time without the prayers of so many. God is meeting us in so many ways, and we are just amazed at the intimate love of God we see in so many small moments.