Skip to main content

.Jackers Update (long overdue).


Oh man, am I way long overdue in writing out a Jack update. Please please forgive the laps. I have been wanting to write, and each time I try to carve out time, things just get in the way. Has it really been over a month since I have updated in how Jack is doing!? So sorry

Well, the good news is that this has been the best and most normal past month we have had with Jack since December. He has been loosing more and more weight from the steroids, he really looks great. He has been going in every 10 days for IV chemo, and his counts have stayed really good. He got a little low a week ago, but bounced right back.

We have had a few colds here, and everyone has had it, but answer to many prayers, Jack never had a fever and has been able to recover from all of it! Each visit they take his vitals, and it has been amazing to me to see that since November, he has grown 2 inches! He has been a joy to us and it has been so sweet to see and hear Tyler and he love on each other so much.

This past Monday was Jack's last day of the 3rd phase of his treatment. He started and ended this phase (which was 56 days long) with a spinal tap. So he had to be put under anesthesia for those. The rest of the visits were just chemo put in through his IV. He has been such a champ all these visits. Even the longer ones, when we are waiting around. This past spinal tap was by far the hardest visit for us.

We had a new anesthesiologist for this visit, and he gave Jack such a light dose of anesthesia, that almost immediately after they took the gas mask off, he woke up. He usually sleeps for 20 minutes after the procedure, and wakes up cheerful and ready to play (which is AMAZING). This time, by the time I got back to be with him, he was loopy, angry and crying uncontrollably. I honestly did not know what to do, as he has only one other time responded that way (and that was when he was on steroids).

Needless to say, I was glad when, an hour later, he returned to his normal self. So that ended the phase called Interim Maintenance #1. We repeat this phase in 2 months. We actually have a little break until the next phase comes, for which I am so so grateful. He starts the 4th phase, Delayed Intensification, on June 14th. This is going to be when things will take a sharp turn from bliss to difficult. He will be on steroids again for 7 days on, 7 days off, and then 7 days on again. He will also be getting a bunch of new chemo drugs that are higher doses and have combined side effects of dropping his counts to the bottom. We are trying to prepare for the worst, so to be pleasantly surprised at good responses to the chemo.

Right now, I am not tempted to be fearful of this phase coming. But we are 3 weeks from that time and in a very busy season, so there is much distraction. As it gets closer, I know my heart will be tempted to fear and to worry. But I am confident that the same God who has been near and holding us close, will be there then.

I am grateful this time is coming during the summer, and not during cold and flu season. I am grateful we get to go on a little family vacation before this new phase begins. I am so grateful to have had these past two months to get "our Jackers back." There is much to be grateful for.

This quote was recently shared with me, and oh how wonderfully refreshing and helpful, when even things are going well, life is still life interrupted! I want to view every spill on the carpet, every delay at the hospital, sleepless night, hungry crying baby, fussy boy, skinned knee, laundry to fold, dose of chemo, meds to be taken, kisses to be administered, and hugs to be had, and tears wiped away as the rich rich life God has given me.

"The great thing, if one can, is to stop regarding all the unpleasant things as interruptions of one's 'own,' or 'real' life. The truth is of course that what one calls the interruptions are precisely one's real life--the life God is sending one day by day: what one calls one's 'real life' is a phantom of one's own imagination. This at least is what I see at moments of insight: but it's hard to remember it all the time." C.S lewis

"Trust in the Lord with all your heart, and do not lean on your own understanding. In all your ways acknowledge him, and he will make straight your paths." Proverbs 3:5-6





Comments

Dave said…
Tough times call for deep faith. I will continue to pray for you guys. God Bless.
Jordan Family said…
Continuing to pray for you and your precious family! Love and hugs from Texas -aj

Popular posts from this blog

Diagnosis and Grace

Friends- "God is our refuge and strength, a very present help in trouble" Psalm46:1 Much has happened since I last wrote only 2 short days ago. We found out much later that night a new diagnosis, that our sweet boy has leukemia . We were not completely shocked but we were certainly shaken. After I posted about what was going on at Shady Grove, and we waited a bit more for some results, and we were informed that we needed to take Jack to Children's Hospital in DC for further testing with specialists. This raised our concern level quite high as you can imagine, that even with a snow storm coming, we were needing to make this trip. I began to google the combination of things they had found in the tests done on our little boy (swollen spleen, low platelet count , swollen lymph nodes) and came up options that were NOT Lyme disease, although a few of these symptoms did also look like Lyme. As a result of the google quest, I came across some concerning outcomes, one of the most...

.coming home.

Well, the past 24 hours have changed things again for us! The biggest update, is that we are being discharged tomorrow afternoon some time! The reason this is so crazy is that the Dr. who was on the floor yesterday, was telling us she wanted to keep us here for the entire first month of Jack's treatment. We had begun to think through how we could do this as a family and all the changes that would entail.... and then our nurse came in this morning and told us she was pretty certain we were going home, as early as today if we wanted!! Let me tell you about the past three days that lead up to this decision of our doctor. Firstly, you should know that when Jack was diagnosed with Leukemia, he had a blast count in his blood of 37. That count is now at ZERO!!!! After the central line was put in on Thursday, they began his chemo treatments Friday. He had been having a fever up until that time. He has responded so well to the chemo, and other medications, that he has been fever free since...

.Day by Day.

"The steadfast love of the Lord never ceases; His mercies never come to an end; they are new every morning; great is your faithfulness. The Lord is my portion says my soul. Therefore I will hope in Him." Lamentations 3:22-24 This has been the cry of my heart these past few days. When thoughts of the future loom ahead and what this is going to look like in a week, month, year are ever present, we are seeking to take things one day at a time. And even as we take it one day at a time, each morning, we are faced with more of the unknown- what the day will bring, how Jack will be feeling, how he will respond to his meds, how he will respond to the staff here, when the nasty side-effects of chemo will begin... the list of unknowns are seemingly endless. Not only is the thought of what the day will bring full of unknowns, but we are also very tired, as we are not sleeping much at night and so we are tempted to view the day through the filter of weariness. So yes, it is a fight each...