by Courtney Kruse | Aug 12, 2014 | Blog Posts
Noah has been doing something that (to me) look like seizures. The pediatrician today had very little feedback for us as to what this could be, only said it doesn’t sound like the more common “infantile spasms.” He making a referral to a neurologist and is setting up an EEG. My momma heart is sad that he will have more tests, and I hate helplessly watching him tremble. They were able to coordinate extra leads during his sleep study tomorrow night which is checking on his oxygen requirement. At some point today they will call us with an appointment with a neurologist- pray it is soon! I hate, hate, hate this waiting while he continues to have these little shaking periods! Pray it doesn’t affect his development! He hasn’t been moving his right arm as much, and is preferring to look to the left:(
Yesterday Noah also had an appointment with endocrinologist- the least of his issues, and nothing to report.
It’s one more thing he has to deal with, and another doctor in our “collection,” and I just want it to go away.
Meanwhile, he is happy and growing and doesn’t seem to be troubled by any of this. Blessings.
My wonderful mother in law, Gayle, was on the phone with scheduling at the clinic, and discovered the stranger on the phone has been praying for Noah! AND she reported that there was a group in Australia praying for him!!!! Incredible. Knocked my socks off! In those times when I feel like I can’t pray, apparently Noah is being prayed over by many!
by Courtney Kruse | Aug 1, 2014 | Blog Posts
After being on an elimination diet for the last week and a half, Noah has less blood in his poop, but it isn’t all gone yet. I am still hopeful it is a dairy or soy intolerance.
This week Noah had an appointment with his pediatrician followed by a phone appointment with his Hematology/Oncology doctor. The labs drawn in Mankato showed 0% blasts, we were told this by his pediatrician. Tears. I wanted this to be true!! A few hours later that day we received a call that that number was actually 9%. BUT then Hem/Onc doctor called us from Rochester saying not to trust that number.
After discussing the pattern with the Hem/Onc doctor, we discovered that apparently the equipment here doesn’t give accurate results all the time (but sometimes it might be correct as the discrepancy wasn’t too far off a few times). Looking at the history of bloodwork, it looks like the white blood blasts in Noah’s blood are sometimes down in Mankato, but in Rochester they are about 20-25 percentage points higher. The blasts are what we are most concerned about, but we don’t have an accurate picture of what they are doing from the labs drawn at home. We go back to Rochester in 2 weeks. When we thought those blasts were going down or spiking up, they were likely making small changes week to week and hovering around 30-40%. Good news– sort of. I’d rather see them hovering a bit lower. It makes me wonder if those blasts were actually higher when his hemoglobin was dropping a few weeks ago when he needed a transfusion. I’m not sure what the lesson is, and I’m irritated about the emotional rollercoaster I’ve been living these last months.
The longer he has this, the higher the chance he would get full blown AML. About 80% of babies who overcome this transient Leukemia have done so by 36 days of life. Noah’s 3 month birthday is this week. Every day he isn’t better, increases the likelihood of getting AML. I’m impatient for him to be done!
Noah is my sweetest baby yet! Sleepier than my other babies, which makes him super snuggly. The only time he really cries is if he is lying alone, and whaps himself in the face or scratches himself. Then he angry cries until I pick him up, and he is instantly soothed. Even when he has labs drawn, just picking him up makes everything OK. I wish I could make it ALL better with a snuggle.
Maybe this is the lesson to be learned.
Some trust in chariots and some in horses, but we trust in the name of the LORD our God. PSalm 20:7
Some trust in lab results and some in percentages, but we trust in the name of the LORD our God.
by Courtney Kruse | Jul 27, 2014 | Blog Posts
During the NICU days I spent time meditating on and memorizing this verse:
fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand. Isaiah 41:10
There has been much reason to fear these days, and much of my day is spent imagining what it will be like if…
This is what’s been on my mind lately.
“Fear not… be not dismayed” is my part. I must be obedient in pushing away those fears, but I do not have to do it alone!
“For I am with you… for I am your God” God, who spoke the universe into being, who loves us and made us His own is with me as I change those diapers, and with me as I hold my screaming baby to the table as they stab holes in his arms, and with us as we hear hard news from the doctors.
“I will help you.” He will help me when we hear words like “oncology,” and “chemo.” He will help me when I have to teach my baby to put his fingers in his mouth, and encourage him to turn his head and other things babies are supposed to do on their own. He will help me read a pile of books to a pile of boys, and take the crew to the park, and enter the boy’s sleepatorium for the seventh time and sing sweetly at bedtime when all I want to do is sit with my baby (as if that somehow will make him all better).
“I will uphold you with my righteous right hand.” He holds me up in righteousness when I can’t do anything right.
So, why should I be dismayed? Why should I fear?! It’s a minute by minute decision.
by Courtney Kruse | Jul 25, 2014 | Blog Posts
Our first appointment on Weds was with a GI specialist. He said the reason for the bleeding could be 3 things. The easiest and most common thing is a dairy or soy intolerance. So, I am cutting dairy and soy from my diet and we are calling back in a week if the bleeding doesn’t stop. I am skeptical, as my diet has been just 1-2 servings/day. I hope this is the cause, because the other two problems are big problems. He ordered an ultrasound of Noah’s abdomen and they saw his spleen is enlarged just a little bit, and everything else is normal (good news)!
The Hematologist/Oncologist saw him next and his bloodwork came back with his platelets and red blood cells staying about the same, which is fantastic considering he was bleeding!! The percentage of blasts in his blood had over doubled in 1 week. More tests next week, and if that blast percentage increases at the same rate, his doctor said we would discuss a bone marrow biopsy.
After talking with the doctor yesterday, and reading some studies on my own, I am understanding TMD more. From my understanding, babies who still have TMD after 36 days of life and are premature have a higher chance of having leukemia that would need treatment- AML. BUT he does not have other things working against him like an enlarged liver or super elevated white blood count. So, even though I know more, we still wait.
Dave and I were joking that he is definitely my mother’s grandchild as he has chosen the most alarming and dramatic path to getting better:)
I was told this week by someone wise that they were praying for his temporary healing because forever healing doesn’t occur until we get to heaven. Trusting and waiting on healer God.
by Courtney Kruse | Jul 21, 2014 | Blog Posts
The last week has been rough. There has been some small amounts of blood in Noah’s diaper. On Thursday the first diaper of the morning had a big blood clot, and then subsequent diapers had more blood. Called, had an appointment, and they did a bunch of bloodwork. The bloodwork for the last 2 weeks in a row looks worse. They aren’t going to do anything about the intestinal bleeding, except watch his blood work, and transfuse when necessary. We have instructions to go to the ER if the bleeding gets worse. It breaks my heart each diaper change, knowing his body isn’t able to keep up with production of blood and not knowing why he is bleeding. We have appointments with a GI specialist and Hematology Oncology this Weds, and they have said they want to watch Noah more closely with weekly appointments. Sigh.
I waited patiently for the Lord;
he inclined to me and heard my cry.
2 He drew me up from the pit of destruction,
out of the miry bog,
and set my feet upon a rock,
making my steps secure.
3 He put a new song in my mouth,
a song of praise to our God.
Many will see and fear,
and put their trust in the Lord.
My steps are secure. He inclined to hear my prayer. He puts a song in my mouth.
There are still lots of questions, and the waiting is hard. Keep praying!
Thankfully Noah mostly seems not to notice (except when they are stabbing him). He is happy, eating well, growing, cooing and holding his head up. Seeing other older kids at the clinic in Rochester — I am so thankful Noah is going through this as a baby!
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