An OK Day
We're having an ok day...Noah is a little stressed out and letting us know, but he is reacting well to the chemo. He is working on his last dose of etopophos right now, followed by another dose of Zofran (no vomiting please!). The last drug he will need here is a switch from Bactrum, which Dr. Reddy believes caused his rash, to Pentamidine, another prophylactic antibiotic, which he will only have once a month during his treatments. We're praying there is no reaction to this one. After some regular fluids overnight we should be free to go in the am after dr.'s rounds. Because of his drop in ANC after the last treatment, we are prepared to be back here in about a week to week and a half for treatment for neutropenia.
This stay, as John mentioned last night, has been better than last month. Being here is like a wake-up call for me; we run into familiar faces that have been here since our first visit, we hear kids screaming in pain down the hall, see the scared faces of parents heading to the PICU, and realize that "it could be worse" or "at least we're not dealing with this".....helps us keep our perspective. And that seems horrible and makes me feel guilty when I think about it - us comparing our situation to others and counting our blessings, because that means someone else is dealing with a heavy load. I just pray God gives them strength and power to get through it.
Dr. Cook just came by and we will definitely be heading out sometime before lunch tomorrow, as long as Noah does well through the night! Good news, cause I am ready to get out of here. :)
I've been keeping up with a little guy named Joel Green from CO. He just had surgery to remove a tumor on his brain stem and is doing well as far as I can tell. His parents are still awaiting lab results and are rallying people to pray for his healing...please add him to your list as well. You can read about his story and see his sweet pictures at the website:
God is good, all the time. And all the time, God is good. He will draw near to us when we seek Him, and prepare us for what lies ahead! We are still trusting in His promise for healing and taking it one day at a time. :) Thank you for your prayers and encouragement, and God bless!
Second Chemo Treatment - John
We are back at Children’s Hospital in Birmingham tonight. Noah has begun his second round of chemo treatments. This morning we hit the road shortly after seven and arrived at clinic 8 for “check in.” We are very encouraged with the doctor’s assessment of Noah’s status. He is doing very well for what he has been through and Dr. Reddy, Noah’s oncologist, told us he doesn’t need physical therapy any more. We are so glad for God’s healing that has and is happening.
Noah was glad to see his nurses on 4th tower again. He knows many of them by name. He knows how to help make the blood pressure machine work – seriously. He presses the right buttons to make it start, he helps with his temperature readings and did very well with his port access. He is getting used to all of this. In one way it is a relief. He isn’t as scared anymore and we don’t have to fight him as much to stay still. On the other hand it is a tragedy that any child is familiar with any of this at all. So far we have had no adverse reaction to any meds and he is sound asleep in his bed. It is quiet in the room tonight and I think we will sleep well. This is a much better trip than the last one so far.
We got to see our friends Gary and Elijah Seritt today. Elijah has been through so much and is still recovering from multiple surgeries and treatments. Gary has been a huge help to Jessica and me through this season. His family has really been through some tough times but they have been a real witness of God’s love and His strength. You can read their story at http://www.caringbridge.org/visit/elijahgseritt
We would like to thank all of you who have contacted us with cards of support and all of your prayers. Noah is here because of the grace and power of God and the prayers of His saints. We can’t say thank you enough!
We may get to come home Thursday night or early Friday. Please pray for Noah’s continued healing through this difficult time.
Emotional Roller Coaster
I feel like I should be blogging more often, but there's really not much I can think of to write here lately, but I'll give it a try. Noah and I have been hanging out at the house mostly; I get out here and there when John or one of our moms can stay with him. Noah has been for a car ride several times, only to find he's getting out at the hospital or not getting out at all. But at least he gets a change of scenery. We had his labs done yesterday morning with good results. His ANC was as high as it's been since before the first round, so we got the thumbs up for the second round of chemo; we leave tomorrow morning at 7am and will probably stay at Children's through Saturday. Noah has a rash on his face, arms, legs, and bottom that's been sticking with him for about 6 days, and we're not sure what it is or why it's there. Hopefully we can figure that out tomorrow as well. He's had some headaches, and has been a little more clumsy and angry than usual. He is becoming even MORE strong willed than ever...he is approaching the 2 mark; I suppose that has something to do with it. It's SO hard not to laugh when I catch him doing something wrong (like sitting on the dining table) and he looks up with a big grin and yells, "Hi Mommy!!!" in an attempt to distract me from what he's doing.
I think this stay at the hospital is going to be better; we will definitely be more prepared as far as what to expect and how Noah will react. During the last treatment his nurse gave him a stethoscope to keep. They take his vitals a good bit, and in the beginning it was nearly traumatizing for him. Now, he helps put on the blood pressure cuff and actually pushes the button to start the machine, and he "helps" take his temperature with the "beep-beep" as he calls it. (The stethoscope is considered a "beep-beep" as well.) It's cute, but sad at the same time, that he knows the routine.
I know this blog is very random: but right now Noah's working on a puzzle of motorized vehicles and yelling "race car" and "helicopter," which sounds more like "heh-cot-ker." He just learned those words in the past couple of weeks. I remember sitting in a small office with his surgeon moments after he removed Noah's tumor, with him telling us Noah could most likely be a special needs child. He would have to re-learn to walk, talk, even move his arms. He said there were a few moments when he almost just had to close him up because Noah was loosing so much blood - they almost lost him. Now looking at him running, playing, screaming, singing, dancing, throwing a tantrum, being disobedient....I have to praise God. If I'm not chasing him around the house, at least once an hour I find him in the bathroom washing something in the sink - yesterday it was the DVD player remote - but in those moments of frustration I am SO thankful that he is here for me to be frustrated with!
Just to be honest: I've been in a pretty low spot this week. I know I've written before about staying strong and focused by comparing our situation to others, remembering that our situation could be so much worse, and letting the Lord remind me of the bigger picture, and I still believe that. But this week I decided to just grieve my loss of normalcy, to just be angry, to just cry, to just let those emotions go that I've been trying to pretend weren't there. John and I talked about how it's getting harder and harder to answer the question, "How is Noah?" 'cause that question is so relative. Some days I can say, he's doing great for his circumstance. Other days I want to say, well, he has cancer, and his life is in jeopardy if these chemotherapy drugs don't do their job. And even if they do the job, there is still a chance that this tumor could recur and metastasize to other parts of his body. Now, this is nothing against anyone who would ask about Noah...it's just that this journey is an EMOTIONAL ROLLER COASTER; some days are harder than others to keep my emotions in check. So it's probably best that I am a bit ostracized from the public right now! :) Anyway, that's where I am. I know the road is long, but I also know that my God is FAITHFUL to provide what He has promised...healing for my son, in one form or another. Last night He reminded me that I can grieve for a time, and I may be angry for a time, but joy will come in the morning. And it has.
"Therefore we do not lost heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal." - 2 Corinthians 4:16-18
Don't focus on present suffering, but on His joy to come.
This morning started pretty early for our little man. We woke him up and put him in the van and took him to Athens hospital for some lab work. He has to have his blood checked twice a week and today was one of those days. He did very well and his blood count is ok. It's good enough that we don't have to give him a shot every night. That's a huge blessing.
We have one week until his next chemo treatment. His energy is almost back to normal and his appetite is getting better every day. Once he has his treatment though it will be back down hill. We are more prepared for this now I think. Knowing what to expect makes it a lot easier to deal with. Noah is strong and God has given him a sprit of a fighter. I sometimes wonder if Jess or I could handle this situation as well as he does if we were the ones going through the treatment. He is a tough little guy.
I want to express my thanks to some old friends of mine and my brother who took my jeep and repaired some parts that had made it unsafe to drive. In this season of trials and difficulty, some amazing people have allowed themselves to be the hands of God to provide for us what we could not do on our own. Thanks guys - it's good to have the jeep back!
I also want to thank the youth ministry at Friendship church for the bracelets that say "Pray for Noah." To be quite honest, I get choked up every time I see someone who has one on. I received an email tonight from a Pastor asking for 20 of them. Most of these people we have probably never met, but they are praying for our son. There is no way to express the gratitude in our hearts for such an outpouring of love.
I have heard that there was some confusion concerning what the donations for the bracelets go to. There is an account at Friendship Church in Athens specifically for Noah and his expenses. All the proceeds from the bracelets go into this account. Thanks to the Youth Pastor and good friend of ours, Jody Hooven, for making this possible!
And thanks also to you for keeping up with Noah. I looked at the stats of this website today and over 700 times this website was looked at - today! We are so blessed to be supported by so many with your prayers and encouragement. I know that one day we will have an opportunity to explain to Noah just how much he is loved by friends and strangers and how great is the family of God!
House arrest, Wii, and Going Bald
The pictures above are of Noah playing baseball on the Wii last night. He's a pretty good pitcher! :) We've had a lot of fun playing and just being together watching movies, etc. for the past few days since Noah and I have been under house arrest. We haven't had any visitors, even the grandmothers, for a while. We're trying to do everything we can to keep him healthy. When we left the hospital on Tuesday his white blood cell count was under 3000 (average counts for a "normal" person should be from 5000-10000). We go to Athens Hospital on Monday to check his labs again. Even if the counts look better, we're still not going to have any visitors; it's just too risky, after what happened last weekend. I'm not going to be getting out much either, in an attempt to keep myself well, and I will have my Germ-X with me when I do! John of course is around people everyday, but he's trying to take precautions as not to bring anything "unwanted" into the house. It's hard to do, but it's for the protection of our child and it's only for a season.
Noah's dr. spoke with me briefly before we left on Tuesday about the potential of genetic testing/research in the future. I am all for this, since the first thing I questioned when I heard Noah's diagnosis was, have I passed a "cancer gene" to my child? I've written before about my dad - he was diagnosed with an astrocytoma grade II when I was a child, and died in 1988 from it. His mother passed about 6 years later from breast cancer that had spread to her lungs and other areas. Her mother also had breast cancer and eventually died from lung cancer. Dana Farber Cancer Institue began a case study on my family shortly after my grandmother died, and found that she had Li-Fraumeni syndrome, which is a defect in a tumor suppressor gene and increases your risk of cancer. My died was suspected to have the syndrome, and I believe one of his five brothers was tested and has it as well...correct me if I'm wrong guys! All that being said, Dr. Hawthorne is very interested in my family history, and hopefully Noah and I will have some testing done in the future. She (Noah's dr.) did encourage me to be on the lookout and have regular dr. visits since I could potentially be a carrier of the gene.
I've been walking around the past 2 days with one of those sticky link rollers in hand...Noah's hair has started falling out and it's worse than a long hair cat! I'm constantly rolling his clothes, the pillows, basically anything his head touches...and his head. :) It's a game for him now. I'm guessing he will probably be completely bald within a couple of weeks.
We have been notified of several fund raisers that have been scheduled for Noah, and we are SO grateful to those who are organizing these events. The bills have started coming, and every little bit helps to offset the cost of keeping him well! I'll say it again - we have such an amazing community and are so thankful for all the support we've received. We thank the Lord for you daily, and ask that you be blessed in return. I hope everyone has a great weekend - try a time of "house arrest" with your family like we are...it's actually a lot of fun! :) We're going to get some takeout, watch a good movie, play some Wii baseball...good times. I'll post more after lab results on Monday. Be blessed!!
Just a quick note: We are home!!! We were discharged around 6pm last night. Noah's ANC went up after the transfusion, and hopefully it will continue to go up! We are going to Athens Hospital on Monday to check his counts again.
I'm slowly learning how to upload videos to the site...I will do my best to get more posted so everyone can see how great Noah is doing. I'm so thankful for all the support and prayers! Will post a full blog soon.
Still at hospital
Dr. Hawthorne and Dr. Watts came by earlier this morning with the lab results; Noah's white count, platelet count, red blood cell count, and Absolute Neutrophil Count all dropped today, with ANC going from 36 yesterday to zero this morning (that's the one they want at around 500). So, he's going to have a blood and platelet transfusion sometime today (hopefully before lunch but our nurse said you never know how long it will take to get the blood). Good news - since Noah looks really good and he has energy, etc. we MIGHT get to go home tonight or tomorrow morning! They will monitor him during and after the transfusion and see how things go. John went back to work today but will come back tonight and hopefully get to bring us home. :)
I'm really glad we may get to come home, but I'm also nervous...since his counts are so low I'm going to probably go into overtime trying to keep the house free of germs! Please keep praying for Noah's health, for a successful transfusion, and for us all to have strength for today. God bless and I'll keep posting when I know more.
Noah is sleeping soundly and I pray he does all night! Last night was a little rough; he was woken up by a blood pressure cuff around midnight and let the entire floor know he wasn't happy. Tonight I believe the order is to do vitals only when awake! He had a good day - white cell counts are gradually climbing, but the ANC is still too low for us to safely leave...I'm ready to get home but not at the jeopardy of my child's health. I'm not very medically minded, so I'm still learning all of these terms and drugs and side effects, etc. It's so hard to realize that even though Noah looks healthy, plays hard, has no fever...he is still sick and his body can't handle being exposed to anything that could possibly cause infection. So, we'll stay here as long as it takes. And apparently this will more than likely be the norm for the next five months or so.
Thank you for your continued prayers, and I'll let you know what's going on tomorrow!
First chemo side-effects
All is well - or "good enough," as John would say, here in the Crowe house! Noah is feeling a lot better than when he first came home from Chidlren's a week ago. About 5am the morning after we arrived home he began vomiting and couldn't keep any of his medicine down. Thankfully we got that under control around noon and he hasn't thrown up since! We've even stopped the Zofran and he is showing no signs of nausea anymore. His energy level is definitely not what it once was, so he takes more breaks during play time and he naps about 2 1/2 hours each day...but other than that our little guy has had no other side effects from the first round of chemo, thanks be to God. The nurse gave us a whole slew of things to be on the lookout for, from fever to bleeding from certain areas....so far so good. We returned to Children's this Wednesday for a follow up visit. We had to wait quite a while, but the wait was worth it. Noah's labs looked good, we were told. His white blood cell count is down, as expected, but platelet counts, kidney and liver all look good. I'll take him to Athens hospital on Monday to be tested again; we will more than likely do that twice a week. Noah has pretty much been on lockdown since the chemo treatments. Because his white blood cell count is down he is at a much greater risk of serious infection, so I am asking that no one come by the house at this time, sick or not sick. I can't control much about this situation, but I can control how clean the house is and who comes in and out, so that's what I'm doing. (All the moms know what I'm talking about!) Of course John is back at work, and I still have to get out and do some shopping, but we are very careful about what we touch and we use hand sanitizer by the gallon! We also give Noah a shot every night to help keep those counts somewhat elevated...but we won't be surprised if they eventually drop to 0.
Back to the visit on Wednesday: Dr. Reddy's fellow, Dr. Hawthorne, did a short exam and explained the lab results. John asked her what she thought about Noah's recovery from surgery and his reaction to the chemo., and she said, "he is doing spectacular, and you are blessed." Praise the Lord! We credit his amazing progress to God, and to all the prayers that are being lifted up on his behalf every day. I don't know why Noah was chosen for this...but I pray that his continued healing and the answered prayers on his behalf will be a testimony to millions throughout his lifetime. I know in my heart that his little life has a big purpose, and knowing that helps me not to focus on the "problems" but on the good that has come from his situation.
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.