Skip to main content

.Another rough day.


Before I get into how Jack is doing, I must thank you for praying for my boy. Thank you for lifting us up in prayer. Thank you for serving us practically with meals, child care, and many many other numerous ways we have been served. We are so grateful, and humbled that so many would take the time to read about and pray for us. So thank you.

I am not sure how much detail to go into... the last time I updated the blog, just a few nights ago, we were home gearing up for another night caring for our boy. I forget that when I am updating on Facebook, I am not getting to the blog! Tonight, my home is missing two beloved men... Jack and Jordan are sleeping at the hospital. Jack was admitted Friday morning with a fever of 102 and since then, he has only gotten worse.

His ANC has gotten all the way down to 40 this morning, and that is after a blood transfusion. He is pretty much miserable right now and has been for the past two days. He is on codeine to ease is suffering, and he is getting loads of antibiotics as well.

I wish I could say that after being at the hospital for more than 24 hours, that he was doing better, but as of tonight when I left, he was about the same. Which is miserable. He was given a blood transfusion last night which transfusion gave him a much needed bump in the oxygen rich red blood cells, but he is still very weak. The sores in his mouth seem worse than before, and are truly hurting him greatly. They are pretty much all over his tongue and lips and it just hurts him so much. He can hardly eat, even drinking is painful. He has gotten to the point of trembling and sobbing, hiding under his doggie blankets. We are hoping to get him some numbing mouth wash tonight. The nurse might have already gotten it to him, I pray.

They gave him some meds today to adjust the Ph of his urine, so that it is less acidic and hopefully less painful to pee.The main issue with peeing is that he has a large blister/sore on the tip of his urethra and it is agony to pee with that there. He still has not pooped. I have lost track of how many days it has been since his last poop. The results of the xray taken last night were that his bladder is extremely swollen and there is a large mass of poop in his bowels. Peeing seemed to get a little easier for his as the day progressed.

I have to say, that seeing him like this has been agonizing and heart breaking. I want so badly to ease his pain, take the mouth sores away, calm his fears. I do not think I will ever forget the fear and agony on his face as he was desperate to pee last night but terrified of it. It is one of the most difficult things I have had to walk through, watching my baby suffer as he is. We are trusting God, and not blaming him... but it is difficult none the less. Without hesitation, I would gladly take his place. I know he is longing for home right now, and I pray that the Lord comfort him, that he been keenly aware of the presence of God.

Before all of this took place I had been reading on the suffering of Jesus, leading up to his crucifixion, and the sorrow and suffering he experienced. The fact that he was alone in his sorrow in the garden before his arrest, tells me that I would never be alone in my suffering.He knew suffering to greater depths than we could ever endure, and he is compassionate towards us. That he gave himself completely and voluntarily to be beaten and bruised, so that I could be accepted as a child of God, leaves me undone at the lengths he has gone and the love he has shown. He bore my sin, his Father turned his back on him as the weight of my transgressions were put upon him, he gave perfect self-sacrifice, leaves me wearing the perfection of Christ. I know that he weeps with me. I know that he is familiar with my son's suffering, and I know that he is near, very near, even in a hospital room. How glad it makes my heart to know that he his familiar with our grief.

I rest in him, I pray my son knows this peace as well.


Comments

Catherine Brown said…
Talia, I just wanted to let you know what an encouragement your blog is to me. I'm a friend of Julianna Malnar and my husband knows Jordan's dad, I'm not sure how I came across your blog - maybe through Worship Matters?
Anyway, I am praying for Jack and your family especially at night as I'm awake with my newborn and insomniac 18 month old. Thank you for the reminder that God is always good even in the midst of the most awful circumstances. Praying especially for His tangible presence in that hospital room.
Anonymous said…
Praying for your little man and your family as you endure this trial. It breaks my heart to think of your heavy hearts but I know that God is the lifter of our heads.
Ashley said…
My name is Ashley... I go to a Sovereign Grace Church in Chesapeake Va and just happened upon your blog. I am also a Hem/Onc Nurse at the Children's hospital here. I see the pain that you and your sweet boy are going through. My heart breaks with you during this suffering but please know that GOD IS WITH YOU. He is with your boy. He is faithful. His everlasting arms are underneath you and your precious son. He cares. I am praying for much Grace and Strength as you face each day.... one day at a time sweet sister.

With many prayers from Chesapeake,
Ashley
nonickname said…
Sweet Tali. I am just grieving with you right now and crying out to the Lord to heal your son in the name of Jesus. I feel encouraged by your faith and trust in God. Thank you for taking the time to post an update- Jonathan and I will continue to pray.

If we can serve you in any, any way, please let me know.

Meg
Brandy said…
Oh Tali, I am so sorry for all that you and your family are having to endure. I am praying for peace in the midst of your suffering and ultimately for healing for your sweet Jack.

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...