Skip to main content

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

Comments

Bethany Bussell said…
praying for all of you guys, tali. love you!
~bethany
Evy said…
Praying for you all dear friend!
Jessica said…
Tali,
I will be praying for you guys! I know you probably have things that you are putting on his bottom, but here is something, just in case you haven't tried it yet. http://www.amazon.com/Earth-Mama-Angel-Baby-Angel-Bottom/dp/B000JVEEW0
This stuff works amazing and is a very gentle, organic balm.
I also have a recipe of a balm that I made for our baby that has been amazing with healing any rashy areas and even scratches and sores on his face or other places. If you have someone who can make it for you, let me know and I'll send the recipe out (I know you are probably too busy to make it yourself, but it is super easy to make and a recipe that I learned in my Herbalist course I am taking). I also learned that when dealing with any rash, some diaper free time is super helpful - not sure how practical that is right now, but maybe something you can try at some point.
Lynnewithane said…
Praying for you all!
The Puncs said…
Tali,
Thanks for taking the time to update your blog on Jack and y'all. It's so helpful to know how to pray for you guys and helps me to carry you guys on my heart.
Davfe
Moriah said…
Praying for Jackers, and missing you all so much!

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

Just too funny

I had to share this funny moment with Tyler. I guess I will always be a cheerleader at heart- so I was cooking dinner and decided to do a little "cheer" of Tyler's name for him to see what he would do.... and he just laughed so hard- it was on the verge of crying! See the little video below!

.Results and Re-Admission.

I am so happy to share that the results from the bone marrow biopsy came back with the results we had hoped and prayed for! They said they found less than 0.1% Leukemic cells in his bone marrow!!! So this is such great news! The prognosis is a good one, and now we get to keep marching on into the next 3 years of making sure the Leukemia does not come back and he is fully in remission! Thank you all so much for all the prayers said on our behalf! I also have the happy report of how last night and this morning went as well... So last night, we woke Jack up at 11:30 to feed him one last time before midnight. He was so sweet and groggy but ate a bunch of nuggets and french fries. We gave him a bottle and put him in bed at midnight and hoped for the best... well, he did not wake up again until 4:45... which was AMAZING for us and him! That was a long stretch for the little guy! After that he cried for a while and Jordan tried distracting him with books and holding him for a while. Jordan w