This picture is of Noah's last dinner before the chemo...he loves turkey and corn on the cob, so we had a Lawler's feast. I expect his appetite to dwindle as early as tonight. We are currently in Birmingham for his 5th treatment (of 6 scheduled) and should be here through mid-day Friday. The past week has been a great one. Noah's blood counts were pretty good, so we were able to get out of the house and even do some grocery shopping with him. He played outside when the weather permitted, and visited with his cousins for a day; he hasn't seen them since December, due to low white cell counts and sickness. Things were almost as good as "normal" so going into this treatment has been hard, knowing his health will begin to decline pretty much immediately and I will be back in hyper-sensitive keep-my-son-safe-mode! So keep praying for us please, especially for John as my patience decreases and my nervousness is on the rise, due to Noah's impending neutropenia and potential for infection.
On a better note, we were able to meet up with a couple of families we've met through Children's that are going through all too similar experiences. It's unfortunate, but at the same time good to have friends to talk with that have "been through it" already, or are going through it with us. There is an instant connection, especially for me, with a mom who can look at me and not have to say anything, and her eyes speak to me, "I know." There is level of comfort in that; I hate it that there are others struggling through this same situation...but at the same time I'm thankful for their friendship and help.
Right now Noah is getting his first chemo drug...the one that requires his blood pressure to be monitored during the entire drip (2 hours or so) and he is NOT enjoying being hooked up to two lines at once! This drug also will begin to make him nauseated, so please also pray against nausea and vomiting for him. He will have one more chemo drug tonight, two more tomorrow, and an antibiotic on Friday morning before we leave.
It is dinner time, so I'm going to close for tonight. The pictures above are from last week...good times. Thank you guys for everything and much love!
I spoke with Noah's nurse practitioner yesterday and after talking his lab results over with the oncologist they decided it would be best to wait a week on the treatment and let his body bounce back a little more. So the next treatment will be Wednesday the 28th. He has lots of energy right now and is eating really well so I'm glad he will get an extra week of that.
This week has brought some unexpected media attention; there will be a story airing on our local Ch. 19 about some of the fundraisers for Noah, ABTA, and his oncologist's research. Also, last week John called the Dave Ramsey show to announce our freedom from debt (except for our mortgage!) and left a detailed message about our situation as of late. A respresentative called him back yesterday and wants us to be on the show this Friday. They want us to mostly talk about the importance of tithing and the provision of God. We will speak with them via skype on Friday morning, but I'm not sure what time the radio show will actually air, or if we will be on the Fox News program. Please pray the the right words will be said and will bring encouragement to others and glory to the Lord. (And pray I don't sound or look as completely uncomfortable as I will surely be!) Thank you for praying!
Noah's lab results came back ok today; white count/neutrophil count is rising, but his platelet count is a little low. He won't get an infusion, but if his platelet count doesn't come up enough by Monday then we will push his next treatment up a week to give his body time to recover (it is scheduled for this Wednesday). This is fine with me as I would like to see him have a week of good blood counts, and let him have some social interaction, which he is starving for!
Our Path for Progress team has already met nearly 70% of our fundraising goal. I am waiting on a price quote for our t-shirts and will get the order page set up as soon as I clear everything with the printer. I also spoke with a representative from ABTA today and we are able to request our donation to be set aside specifically for pediatric brain tumor research, which I am VERY happy about. I asked him what percentage of their funds go to pediatric research, and he estimated between 8%-10% (around $150,000). He said this ratio is consistant with the ratio of adult to pediatric brain tumors. The sad part of that percentage is that of all pediatric tumors, brain tumors are the leading cause of solid tumor cancer deaths in children through high school age (tbts.org). There isn't that much funding for it's research...and that sets a fire under my butt. Now, I realize that ABTA isn't the only organization funding pediatric brain tumor research; there are several other organizations that are dedicated to childhood bt awareness/fundraising/etc (cbtf.org, braintumorkids.org, pbtfus.org). But I know there still isn't enough money floating around in the sea of research funding to figure out why my son had a life-threatening tumor that grew rapidly inside of his brain, and how to effectively get rid of the cancer for good. His treatment regimn is still experimental...and that's kind of scary.
Anyway, it's late and I'm rambling...but please know how much we (my family) continue to appreciate your prayers and gifts and encouragement. I will update again when I know our next date for treatment. Have a great weekend!
"Many are the plans in a man's heart, but it is the Lord's purpose that prevails" (Proverbs 19:21). Holding firm to His truth and promises. :)
This one's short and sweet: We arrived home around 3pm yesterday afternoon! Noah is doing well and enjoying his toys and is happy to be able to run and play freely without the interruption of vital signs check or being hooked up to an iv, etc. We have 7 more days before we return for Noah's 5th round of treatment, and we're going to make it as fun-filled as possible. His blood counts will be checked again on Thursday, so hopefully they will be high enough to continue with the next treatment as planned. Thank you for your prayers; we are so excited to be back in Athens. :)
I knew I shouldn't have got my hopes up...I had convinced myself that today was the day, prayed in faith and stood my ground, but we're still in Birmingham. Noah's ANC was up from yesterday, he just got more platelets, and we're still waiting. I'm very disappointed, so I'm trying to recover from that. John and I have a marriage enrichment class later this afternoon that I was absolutely certain I would get to attend in person; now I have to try to "be there" via skype. This morning after breakfast Noah wanted his shoes on, then found his ball cap and put it on, then asked for his coat...he is ready to get home as much as I am, if not more. He looks good today, is feeling good, and wants to run and play in the sunshine...come ON neutrophils! So my hope is for tomorrow, while I struggle through the long wait for John to get here. Please excuse my negative tone, but I'm just being real. :) It's been a LONG week. Thank you for your continued prayers, hopefully tomorrow's blog will be from Athens.
We're still in Birmingham. Noah just got more platelets and is now playing with his new Thomas the Train set & helicopter (John had an emotional breakdown in the hobby shop). He's feeling a little better today. Yesterday afternoon he spiked a fever again and is now getting an additional type of antibiotic. His ANC is still zero, so we are waiting and praying for that to start going up. Blood was drawn yesterday for cultures, but I haven't heard anything about them - I'm assuming no news means no bacterial infection.
We had some friends visit on Tuesday, and Noah also got to visit with a sweet dog from the "Hand in Paw" program. Yesterday was rough; Noah didn't feel well and I was really tired, so neither one of us had much patience with the other! Thankfully John was able to come down yesterday afternoon to break up the monotony. It seems like the days drag when he is not with us, and then when he is here they fly by...I really miss my husband.
I'm not sure how long this stay will be, but please keep praying for Noah's neutrophils to grow, and for us to stay positive and full of joy and life while we're confined to this small, not very interesting space. :)
Noah woke up this morning very tired - he usually hits the ground running, but his blood counts are very low today (ANC is zero). If anyone has been around him for any length of time they know that he is ALWAYS on the go. He will get blood and platelets today. John is with us but will have to leave for Athens tonight for a meeting. I may not get updates out every day due to computer issues, but hopefully I can get John to keep the site updated from home. Thanks again for prayers and support; we're hanging in there!
Noah, my mom and I arrived at Birmingham Children's ER at about 10:35pm last night. After a traumatic experience of a failed port access, a chest x-ray to make sure the port was still in place (just as traumatic!), a successful port access, labs, antibiotics, and an ice cream reward, we were able to rest a little while we waiting to be admitted. Noah and Mom were both asleep, and I laid awake beside Noah in the ER room bed, thinking about how tired and miserable I was. I heard a soft familiar melody in the room beside me, and gradually I realized it was the song, "My Redeemer Lives" by Nicole C. Mullen. I felt the Lord's presence in our room as I sung the words in my heart:
"Who taught the sun where to stand in the morning
Who told the ocean you an only come this far?
Who showed the moon where to hide 'til evening
Whose words alone can catch a falling star?
Well I know my Redeemer lives
I know my Redeemer lives
All of creation testify
This life within me cries
I know my Redeemer lives
The very same God that spins things in orbit
He runs to the weary, the worn and the weak
And the same gentle hands that hold me when I'm broken
They conquered death to bring me victory
Now I know my Redeemer lives
I know my Redeemer lives
Let all creation testify
Let this life within me cry
I know my Redeemer, He lives
To take away my shame
And He lives forever I'll proclaim
That the payment for my sin
Was the precious life He gave
But now He's alive
And there's an empty grave...."
It was 2:30am on Easter Sunday, and in my selfishness and weakness, through this song the Lord reminded my soul, "I am alive; I've conquered death and the grave, and now I offer you My freedom and My love." What an appropriate time for me to hear that song, a "divine appointment," if you will. And how often do I forget that in the middle of my struggle and weakness I must think on God's goodness and all He has done for me, and sing His praise in order to distract myself from my momentary struggles and be filled with joy and comfort? Quite a bit. So I thank God for His persistence in reminding me. :)
We made it up to 4 Tower at 3am, and were greeted with warm smiles and offers of assistance...I love our 4 Tower nursing staff! They really have a special gift of compassion and sensitivity towards the plight of the patients and families here, and they help to make this journey a little less difficult. I didn't sleep much between getting settled in, clorox-ing everything I can (I'm just slightly obsessive), checking Noah's diaper (when he's on fluids we go through a lot) and keeping an eye on his temp. There was also a child next door that I believe was having night terrors - which I had never experienced until then - or he/she was in a great deal of pain...it was pretty startling. Mom and Noah are asleep again and instead of sleeping I'm writing....it's that 20 oz. Diet Dr. Pepper I had at breakfast - it will keep me awake but doesn't help much with brain function, thus the randomness of my blog!
Noah's lab results look about the same today as they did last night: no neutrophils, very few total white cells, low platelets and red cells...same old same old....so we just wait for those neutrophils to grow, and pray against any infection. He was still a bit feverish this morning, and not feeling very well. He perked up a little before lunch, but then hit another low probably because he's just plain worn out.
Our team's campaign for the American Brain Tumor Association "Path to Progress" is off to an amazing start - we have raised over 50% of our goal and expect to surpass that goal with the help of our t-shirt sales. We've had several people interested in joining our team, which is traveling to Chicago at the end of May to participate in the 5k. Please let me know if you are interested in taking part in this event to help raise brain tumor/cancer awareness, and visit our team page to sign up to run or donate $. The t-shirt order page is coming soon to our website.
Thank you so much again for prayers and encouragement; I will post more on Noah's condition as the week goes on.
I am excited to announce that our ABTA Path to Progress team "Fighting the Flood" for Noah has already met it's initial "modest" goal of $500! We have now increased that goal to $1500. I am very close to being able to create a page on our blog specifically for our t-shirt sales; the proceeds will go to brain cancer research as well. We also have several more runners/walkers joining our team. If you are interested in joining/donating please contact me or visit our Path to Progress Team Page. Thank you so much for your contributions!!
Noah's lab results today confirmed that he is once again neutropenic, and we should expect a fever to spike at any moment. Our bags our packed, so we're just waiting for 100.5 while praying it won't come. Maybe my next blog won't be from Birmingham...
These posts are written by Noah's parents Jessica & John David Crowe. The default author is Jess, and those written by John David will be noted.