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.

Jackers Update

Just wanted to share with you all what is going on with Jack and how you can be praying for him/us. Yesterday was 14 of Delayed Intensification. We were a little nervous that he was going to have to be admitted, because he has had a low grade fever for previous 12 hours. Our bags were already packed when I left to take him to the clinic that morning, but were hopeful that he would be able to come home. When we got to the clinic, the fever was gone. God answers specific prayers specifically!

Late last week, Kelly (the girl who lives with us) had a high fever for two days, then Tyler got it on Saturday and Sunday. And so when Jack began to have a fever Sunday night, we both thought for sure we would be in the hospital today. Since it did not go above 100.1 so far, we are just watching it. Tyler's temp was 102.2, so God is answering many prayers to protect Jack from a high fever.

Another factor that would contribute to him having to go the hospital with a low grade fever, is that Jacks blood counts are extremely low. He is now neutropenic, as his ANC is below 500. (absolute nuetrophil count- the white cells that help fight infection. When this number is btwn 500- 1000, there is generally enough protective neutrphils to fight infection.Anything below 500 is considered nuetropenic). I do not have an exact number, because they had to send his blood sample to the main hospital for a read out, as the levels were so low, the machine they have there will not read it. His ANC has not been below 1,000 ever, so for it to be so low was a little jarring for me, but not unexpected. The nurse told me to expect them to go even lower by next week. His white blood count has never been below 4.5 and today it was 1.2.

So given his low blood counts and the low grade fevers, we are watching him closely. If he gets another fever, we have to take him in to Children's to be admitted for a 48-hour stay.

Also, he has a pretty big sore on his bottom, and changing his diaper has become extremely painful for him. So much so, that he is hoarse from screaming when we wipe his bottom. Please pray that his bottom heal up, that he stop having diarrhea, and that he not be fearful of pain every time we have to change his diaper. It has become an event to change him, dodging kicks and comforting screams.

He is also back on steroids this week. We really do not feel like we ever had a week off from last week from all the effects however. He has been up several times each night, and eating a lot more than usual. Both Jordan and I are pretty exhausted from being up so much in the nights, and are praying for renewed strength and grace for another week of this.

He is such a trooper. Although he is a bit pale, you would never know he has leukemia.Still has most of his hair, with just a few patches that are the beginnings of bald spots. He was jumping on our trampoline earlier, and dancing around. He does tire easily, and that is only to be expected to increase. But other than that, he looks great.

Thanks for the support, prayers and care. We are so grateful, and are so aware of our desperate need for the grace of God to sustain us during this time

.strawberries.

True to the way I do things, I am about a month behind in posting pictures! I took the boys strawberry picking at Larriland with some friends, and it was HOT. It was also Memorial day weekend, and little did I know, that all of Maryland would also be out picking berries! I have never been there when it has been so crowded!

It took a little while to find parking, but once we got there, Tyler began to pick like a pro and Jack ate and ate like usual. We had a boxful in no time, which was good because we were all melting. Here are some pictures of our day!












.a good day.

Just a quick update, to say that today was a better day. Although it seems Jack tires much more quickly and started the day with a hot dog for breakfast; he was not falling apart and we all had a great day. Thank you friends for the many prayers.

Tomorrow he goes in for the shot of chemo in his thigh at 11 and get some blood work done.

.6 months.

Isn't he just delicious. Oh how I love him so. My sweet angel, my happy distraction, the one who forces me to sit down and stop and enjoy the precious moments that pass by too quickly, and gives the sweetest kisses and smiles. I am blessed.




.and so it begins...

We officially have begun Delayed Intensification. I feel like I have to much to post on and catch up on, so here I go! So we had three weeks off between the end of the last phase and yesterday. Jack really seemed to enjoy himself, not having to go to the Dr. so frequently, but I dare say, I do not think he even noticed. The three weeks was more a break for me from the constant visits to the Dr's office.

In that three weeks, we had a visit to the beach with some friends (pictures coming soon), have been strawberry picking, saw my little sister graduate from University of MD, Dylan turned 6 months and started sitting up, Jordan completed the Pastors College at Sovereign Grace Ministries, we said goodbye to many dear friends, and started up going to our new church in Arlington VA. It has been busy and a very sweet time. A good distraction for me for what was ahead.

This past Monday, was supposed to be start of DI, where Jack was going to be getting a higher dose of chemo, some new meds, and back on steroids again. When we went in for his scheduled spinal tap and start of all this, he spiked a fever and was having difficulty breathing. The Dr. observed him for an hour, and decided to hold off on the spinal tap and make a decision about the need for him to be admitted. A few hours later, oxygen levels dropping and wheezing continuing, they decided to admit him for potential pneumonia and since he was dependant on the O2 machine, they decided he had to be transported via ambulance.

We were admitted into the ER at Children's Hospital around 330 and got taken up to a room in Oncology some time around 7. Jack has gotten to the age where he does not want to sit still and have an oxygen mask on for more than a few minutes, and certainly does not want to sit in a room all day. Needless to say, he was a handful to occupy and keep calm and happy. It was a long 12 hour day for me, and when I got home at 9:30 I crashed. Jordan stayed the night with Jack at Children's, and I was so grateful that he came to save me!

The next day it was determined that he did NOT have pneumonia and they were eager to start him on DI. He began chemo and steroids yesterday. I picked Jordan and Jack up around 5 after he got his chemo and other meds and headed home. Today was day 2 of DI and I have to say, he has not been as joyful and playful as usual. I have noticed things about his personality already change, an unfortunate side effect of the steroids. I wasn't expecting it so soon. I had forgotten that he was on double the dose he was on previously, and just thought it would take a little longer to see the effects of this.

So, yes, today was very hard for me. There was a moment in the middle of the day, when all three kids were screaming/crying, and I just felt so helpless. I wrestle with trying to discern how much of Jack being obstinate and angry is just a 2 year old not getting his way, or the steroids causing him to act out. Either way, it is not easy. I am praying that tomorrow, I am filled with more grace to love him patiently and wisdom on how to care for him.

We go in on Friday for a dose of chemo shot into his thigh, and then back again on Monday for the spinal tap and another dose of the chemo he got yesterday. He will be on steroids until Sunday. Little guy has lost two pounds the past few weeks. He hasn't really been up to eating much. I am not sure if the combination of steroids and this chemo will have him hungry, not hungry or what. But I am praying he keeps eating a little!

Even as all of this has been happening, we have been so aware of the many people praying for our Jack and our family. I cannot fully comprehend the fullness of the love of God for us to lay our family on so many hearts, that have served us so heroically. We are still being brought meals, which have been a tremendous blessing, even when we were at the hospital Monday night and Tuesday morning! We keep getting hats sent in the mail for our sweet boy, and each time I am undone that so many would faithfully carry us on their hearts.

I know this is meager, and by no means will ever adequately express the depth of our deep gratefulness.... but I thank you, I am filled with tears of gratefulness even as I type this, for all you friends have done on our behalf. You have been the Lord's hands and feet to us, and I am undone.

I have just begun to get pictures on our computer from the past month, so I hope to get some up on the blog soon. More updates to come as well. Thank you for the prayers friends!