We arrived at Children's around 9 this morning and waited a while for a room to open up for us. Noah was very hungry and tired (which made those 4 hours pretty difficult); once we got in a room he ate a little and took a good nap. He got his first dose of chemo shortly after he woke up and he's doing really well. He has played with his toys a lot, and just before he went to bed he had an audience of about four staff members while he played his harmonica, danced while Daddy played the guitar, and was just having a great time. He is now (finally) asleep.
We've had visits from a neuropsychologist and dietician today, and should see a dentist at some point during our stay. Everything is going really well, and we appreciate the prayers!
We celebrated Noah's birthday this past Saturday with our family. As you can see in the pictures below he was able to get outside and enjoy the beautiful weather and the birthday decorations some friends put in the yard. We even took him to the "kiddie carnival" where the Lion's Club was having a plate lunch fundraiser for him. It was a good weekend. And our house is now covered in EVEN MORE toys and balloons from one end to the other! Noah was really excited to have so many people in the house at once - he went from person to person hugging and soaking up the love. He definitely enjoyed all the attention he was getting! His actual birthday is Sunday (2/28) but since we have his third chemo treatment on Wednesday, we knew he wouldn't be well enough to have anyone over to celebrate this weekend.
Please remember us in your prayers these next few days as we prepare for the trip to Birmingham, the treatment, the side effects...pray for Noah's body to respond well to the drugs, for his appetite to rage, for his taste, for his temperament, for him to feel no pain. I had some blood drawn today, and I forgot how it hurts. This little guy was getting stuck in his arms twice a week for a while. He's tougher than I am! We appreciate all the help that has been given to us, and all the prayers for healing and comfort. We will update on Noah's condition while in the hospital. God bless you!
I just spoke with Noah's nurse practitioner about his lab results from this morning; they look pretty good. We will continue with the (GM-CSF) injection tonight and tomorrow night, then Wednesday night will be shot free! Thursday morning we'll check counts again to see if he can sustain without the injection. He is definitely getting used to the shot, and I'm gradually getting better at giving it, so there is less anxiety between the both of us each night. Last night we didn't have to restrain him at all; he just relaxed in John's lap and didn't even flinch when the needle went in. He's a tough guy now; I wish he didn't have to be.
When Noah was diagnosed, I knew immediately what a long, physically/mentally taxing journey we, as a family, were about to begin. But I had no idea how my spiritual life, my relationship with the Lord, my theology, basically everything I knew/thought about God would be stretched, tested, doubted, increased, etc. I guess you could say I'm spiritually and emotionally worn out. I went for a drive Saturday (which I sometimes do to get away and think/pray) and I found myself, once again, asking the Lord to take this away from us, and most of all, from Noah. After crying and fussing and whining for a bit, I begin to just ask the Lord to come quickly. Come and relieve us from this world filled with sickness and broken hearts; come, and bring Your Kingdom with You. I know that anticipating the Lord's return is good, and we should all desire that. But I feel like my prayer was selfish in nature, because I'm tired of this world and it's sickness. What I haven't prayed in a while is, Lord use this trial to bring glory to Yourself. Lord use my son’s story to bring someone closer to You that hasn’t cared about You. Lord show someone who feels unloved by You that even in their pain, even in their “desert” that You are there, sustaining them, because of Your love for them. You never promised in Your word that we would be free from pain and suffering. You never promised that You would not give us more than we can handle. Paul pleaded many times to be relieved of the thorn in his flesh. When we are allowed to be given more than we can handle, more than we can bear, that’s when it’s so much easier to give it to You. Father take this burden and carry it for us. Let us be an example to others in pain, in grief, in the desert that in EVERY season of life You are still God. In EVERY season we still have a reason to sing, and most definitely still have a reason to worship You. It may be a little (or a lot) harder at times, but because of the hope we have in You we will get through this.
I'm posting a song below that I've been listening to about praising God in the different seasons of life. I hope it encourages whoever will listen.
Thank you again for still praying and encouraging us though this season. God bless!
P.S. And a special thanks to the Lion's Club for their fundraiser coming up this Saturday to benefit Noah and the medical expenses incurred for his treatment.
We're home! This morning Noah's ANC went up a little more, so after another platelet infusion we were on the road to Athens. As soon as I started packing and he saw me bring out the stroller he was looking for his hat and coat. The boy was ready to get home. :) We've had a good day; Noah has played with every toy he owns, just making sure that they are all still here I suppose. We're getting ready for bed and excited about sleeping without being awakened every few hours by someone with a blood pressure cuff and a thermometer. :) Though they are much appreciated! We're just glad to be home.
Thanks for your prayers and encouragement (and offerings of food and other forms of assistance)! You are amazing servants of the Lord. God bless.
It seems like we may be here for a while longer. Noah's neutrophil count was almost nothing so we may be here through the end of the week. I guess I should stop getting my hopes up that we may leave a certain day, because honestly no one knows. We just pray that his daily labs begin to look better and better. There is no "magic number" he needs to reach, but he just needs to set a trend climbing up instead of down. He is still confined to his room, and is doing really well considering that he's been in the same space for 4 days. John is here tonight and will stay through tomorrow, so I'm going to get out and find a new toy to keep him entertained. (We usually get him a new toy or 2 with each stay!) He is also eating better and drinking MUCH better, so he doesn't need fluids constantly and only stays connected to the iv for his antibiotics. This has allowed him to move about the room without me fussing at him to watch his iv, so he's enjoyed today much more than yesterday.
If anything changes I will post again tomorrow; otherwise, we're just waiting!
"Wait for the Lord; be strong, take courage, and wait on God." - Psalm 27:14
Just a quick update - Noah had a better day today. His ANC dropped a little, and he had another blood transfusion late in the day. He was completely worn out from not sleeping well since we've been here, so he slept for 3 hours. When he woke up after the transfusion he was full of energy with color back in his cheeks. He played for a long time, and now I'm still trying to get him to settle down at 11:15pm! Hopefully his ANC will go back up tomorrow, and we may get to go home on Wednesday. We won't know if he has an infection for 5 days (I don't think we'll have to stay that long though). Thank you for praying!
The boys are asleep, and I'm hoping I can get there soon. :) Noah is still getting fluids and antibiotics and is still confined to the room. He received some platelets today; his platelet counts weren't as low as they were this time last month, but because of his fall/bump on the head, Dr. wanted to give them as a precaution. She said even though the ct looked good, there could still be some slow bleeding. So far he hasn't needed any blood, but that could change depending on how low his counts get. I'm hoping they jump up tomorrow and continue to climb through Tuesday so we can get home! His temperature shot up last night, but that's been controlled with a few doses of Tylenol this morning. He's been pretty cranky at times today, but has had many more happy and playful moments than yesterday. I've posted a few videos made today on our youtube page. John arrived around 3pm, about the same time as some friends who came to rescue me from isolation for a while.
Right now we're doing a lot of waiting again. Labs are drawn between 3-4am every morning, then we find out sometime after 8 what they look like. Tomorrow we will know if he has an infection or not. Then we'll keep praying as we wait for the next step. Thanks for your encouraging comments! Will keep you all posted.
It's almost Sunday as I write this...it's been another long day. Noah woke up at 8am with a fever, so we were told to go to Huntsville ER for some labs and antibiotics. It was a very stressful experience; Noah decided to attempt an escape while I was reaching for a diaper and since his pants were around his ankles he dove headfirst for the ground, hit on the "fragile" side. His platelets were also low so he had a CT scan to make sure there was no bleeding or anything else going on under there. It checked out ok. He's just got a big bump and bruise on his head, and I've got one on my heart...it was something I could have prevented. After that he had to have his port accessed three different times, and another stick for labs (needed a different location). Labs showed him definitely neutropenic again, and he got some fluids and antibiotics over a few hours. By the time he finally got calmed down and was ready for a nap the hemsi showed up and stress hit us all again. Fortunately I got to ride in the back with him, and that helped him to nap for about an hour off and on while riding down to Birmingham. After arriving at Children's he continued to get fluids and antibiotics, and had a chest x ray. They think he may have a respiratory infection, but won't know for sure until Monday. Until then he is confined to the room, and basically "quarantined," where anyone coming in has to put on a mask and gown. We're praying that will end on Monday when they can determine what caused his fever this morning.
John is still in Athens since he has to lead worship in the morning. That's hard on all of us to be separated right now. My mom is staying with me until John can come down tomorrow afternoon.
Someone told me in the beginning of this that we had a long, hard road ahead of us - that it would get harder before it got easier...I'm praying this is the "harder" and from now on will be the "easier." Somehow I know that's not the case. Don't get me wrong I have lots of hope for my little guy and faith in the Lord, but this is still hard. I've cried a lot, I've been plagued with guilt, been angry at people, been breaking my back to try to keep Noah happy...but it's almost tomorrow and I know He brings joy in the morning. Maybe not that joy that comes with happy, no-problems, peaches and cream stuff...but the joy that raises from deep within when I realize that He is walking this really crappy road with us, and carrying us when we get too weak to stand. Joy that gives my arms that extra boost of strength when they feel like they will fall off from a 28 pound monkey constantly hanging off my hip. Joy that whispers, I will never leave or forsake you...especially in times like this.
God is still good, even when I don't understand. Thank you for still reading, praying, encouraging, and loving on us. You guys are amazing.
10Hear, O LORD, and be merciful to me;
O LORD, be my help."
11 You turned my wailing into dancing;
you removed my sackcloth and clothed me with joy,
12 that my heart may sing to you and not be silent.
O LORD my God, I will give you thanks forever.
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.