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.

answered prayer and trust

Jack's appointment went well yesterday. We had a great nurse take care of us, which was a relief. There were tears, but they were short lived and quickly forgotten with movies and lollipops. This is an answer to your many prayers. I hope you are encouraged, dear friend and reader. God hears and answers prayers.

A couple things were hard to navigate through, but I am prayerfully faith filled for the coming month. Because his counts are still high, and they wanted to increase his dosage to 125%. This is the same dosage that wiped him out last March and put him in the hospital. This was what I was afraid of, and so I was quite apprehensive about agreeing to this. I felt the strength and courage to push back and question this while trying to respectful to the Nurse Practitioner. We came to an agreement to increase his dosage with a count check in two weeks to make sure this dose is not too high, instead of waiting the whole month to check his counts again.

The second issue, was that since we came in a week early this month, they wanted us to come in 5 weeks from now, putting us at December 20. If you do the math, that puts Jack smack dab in the hardest point of steroid week on Christmas day. Nice right? Not ideal to say the least. I asked if we could move this around at all, and our Nurse Practitioner was very hesitant to say yes. He did not think we should move things around too much, and so my heart was beginning to fill with dread as I contemplated this being a major difficulty on such a special time. I asked him to speak with our Sr. Oncologist for a second opinion, as I just felt there had to be something they could do.

Turns out, the Sr. Oncologist was a little less concerned with a week change to his scheudule. So his next appointment is December 13! Praising God for that one. We go in for labs in two weeks.

All in all, the visit was smooth. Jack did get his flu shot, which he did NOT like. Because he cannot get a live virus, he cannot get the inhalant flu inoculation, but has to get a shot (as do all of us). He really hates those needles, but who doesn't. He was a trooper all day. We were gone from 9:30-4, and he just was a snugly sweetie the whole time.

Unfortunately, the steroids are already making him quick to be angry, emotional, hungry and more aggressive just on day 2 of the 7 days that he experiences effects. So the next week is going to be a lot more of that. I feel my need so desperately during these weeks. When he is sobbing and laying on me one minute begging to be carried everywhere (all 40 lbs of him), and then hitting me and yelling at me the next, it is hard for me to not get angry at him or impatient with the constant tears. I have to fight for compassion at some points, which is so sad to admit. But that is the reality. Steroids stink. I am a sinner and respond sinfully. But I know that it is something we have to endure.

Sometimes I want to stop giving him the steroids, or cut a day out of the dosage. Sometimes I wish we could just stop all this right now. Obviously, I know that we must see this to the end, but if I honestly consider where I am in regards to this whole ordeal, I really just want it to be over.

But I know that, not only do we all have to endure it, but we can anticipate grace to have joy and peace in the midst of it. I have to remind myself, that the Lord has a purpose to the process. That each month on steroids, each visit to the hospital, each tear shed and chicken nugget cooked, well they are not without purpose. Even in the mundane, and in the heat of the trial. If the Bible tells me that all things are from the Lord's hand, then I want to embrace even the most difficult with faith. I am grateful I can look back and recall time after time the Lord's help was very real in those wearying moments. And it is in those wearying moments I have to fight the hardest to believe the truths I know in my head. They have to become heart knowledge.

Anyhow, those are the ramblings of a tired momma who only got a couple hours of sleep last night! Thank you for the prayers. We felt them acutely at the hospital. If you see my posts on Facebook, you have seen these iPhone snapshots from yesterday and today already, but I thought I would post them here as well. The last two are of him groaning and waiting for pizza to be finished cooking.

So grateful for your care.


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treatment day

Tomorrow is Jack's treatment day. We are going in a week earlier than the normal schedule, because otherwise he would be all juiced up on steroids on his birthday and Thanksgiving next week, a not so happy scenario for anyone. So because there is some flexibility in his schedule, we are going in tomorrow.

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Our appointment is at 10:30, and likely we will get out of the clinic by 1 or so. It seems that we really do not get out of there in anything under 3 hours. Seems the norm for out-patient visits, the average being 4 hours.

Gladly, this is just for a blood draw to get labs and receive his IV Chemo, which means we can bring all the snacks a little boy could ask for! His counts have been on the high side for the past couple visits, so I think he may end up getting an increase in the dosage. The last time the Dr.'s increased his meds (last March), the dosage was too high and he really suffered from it (hospitalized for 10 days in April). I feel this time, that I can say no to the Dr.'s if I feel the dosage is too much. I am praying the Lord give me much discernment and wisdom tomorrow as we discuss these things.

As always, Jack hates to get his port accessed, and it is always a tear filled fight. Another prayer request, is that we get a good nurse to do the procedure. We have had some really great nurses, who have managed to place the needle in his port in seconds, and we have also had some shaky handed nurses that just do not do a good job. So always, praying for the right nurse for us tomorrow.

And lastly, Jack has come to dread these trips. As do I. But there is grace, always grace. I look forward to experiencing more grace, with fresh mercies from the loving hand of the Lord.

just life

I can hardly give a more succinct reason for why this blog is so frequently neglected than we are busy living life. There has been a lot going on, between school activities, church activities and meetings, and just life! My little boys are growing so fast, their birthdays are around the corner, as are the holidays and with that a whole lot more to do and less time to blog!

I feel like I have been in a season of adjustment and learning, always learning, how to balance it all. I try not to be too set in my ways, that when a new element comes, I am not totally thrown off balance. But that happens too. Seems like a different lifetime, 8 years ago, when Jordan asked me to be his wife. So much has happened in that 8 years.

It seems like we have a rhythm that follows this pattern: Jack's treatment day, followed by a week of steroids, recovering from steroid week, two really fun busy and happy weeks... repeat. In the mix of that somewhat simple breakdown is a busy schedule that we are constantly trying to evaluate if we are doing too much or can do more. It is a tough thing to consider at times, but we are learning how to put our family first in the midst of it all, while still being as involved as we feel the grace and faith to do.

Tyler is learning so much at school. He was not reading before the school year, and has been making a lot of progress in that. He has new songs to sing to us almost every day, and it is amazing to me that he knows (via song) the oceans and the planets and the continents, and so much more. I have been so happy to see him mature and develop these past three months of school. I also have really enjoyed getting to know other families in his class that live in Arlington. We really love our school. Yay ATS!

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Dylan, oh my Dylan. He is ever the trouble maker as he ever was. But he has been growing so tall and is talking up a storm. I think he has grown 5 or 6 inches in the past year! What he doesn't have in body mass, he has in height. He is still so skinny, but already tall enough for his 2T pants. Although we do not understand everything he says, he is a nonstop talker, and he cracks us up. I really think he is going to be our most athletic son. He just moves so quickly and with no fear. Meanwhile, I am freaking out a little watching him at his antics. I can hardly believe he will be two years old in just 8 days! Where has the time gone?? Do you ever just watch your children and wonder what things the Lord has in store for them?

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Jack is doing really well. His 4th birthday is also just 8 days away! He has grown so much!
He hasn't had a fever in almost two months, and has not had to be admitted to the hospital since April. We are so grateful for this. As he gets older, it seems like he is understanding more of why he has to endure what he goes through, although we cannot be certain he fully grasps the concept of cancer. Each time he is on steroids, it seems to affect him harder. He has been more emotional and hungry, and just an overall train-wreck, these past few months. We try not to do too much while he is on steroids, but it always seems to be a challenging time, no matter how busy or home bound we are. I wish I could explain the madness that takes over him during this time, but I think, that unless you see him before and during, it is hard to fathom such a dramatic change.

Amazingly, we get through those times. Nothing but grace. I am so grateful to have Tyler at school during all this, as being pulled in one more direction can put me over the edge. Simplifying the time to just two kids, has made a dramatic improvement in my ability to meet all the needs with as few tears as possible.

So all in all, Jack is well. He continues to grow, and mature. He is a tender hearted, gentle little boy, who has endured so much. People often ask if he is ever in pain... and I wonder myself, how the chemo that he takes daily effect him. I just come to the conclusion, that because he was diagnosed so young, before he was really talking much, that he has just gotten used to whatever discomfort he may have, as a new normal. He is so tough, and he rarely complains.

We have a dear friend who is occasionally on steroids, and she has provided much insight into our little boy and how he suffers during these times, as she is able to put into words his tears. I am so grateful for her perspective, as it has deepened my compassion and affections to my boy when he is at his worst.

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So we are well. Busy living life. God is good and our life is rich and full of happy distractions and happy causes to throw our efforts into. So through it all, the ups and the downs, the lows, and the really lows, the super fun and crazy boy times, to the sweet snuggles. God has been in it all. We have felt His sustaining grace again and again. We have and continue to lean on and learn more of who He is and why He is completely worthy of trust and praise. Even if my worst fears come true, He is mighty to save. We are so blessed.