Since the last blog we have secured an apartment in Birmingham, only about 1.5 miles from the hospital, free of charge. The Homewood Church of Christ owns a series of apartments on 29th St. South and allows patients and their families to stay there during their treatment/recovery. What a huge blessing it is to be so close to Noah's treatment facility! We appreciate all other housing offers that have been made to us as well. I have a list of homes and people in the Birmingham area in case this apartment doesn't work out or if I ever need to call on anyone locally. I am so thankful for everyone who has responded to our recent news with love and kindness, and especially prayers.
I was very reluctant to stay in Birmingham through the duration of Noah's treatment, especially since the actual treatment shouldn't take very long. I was ready to drive back and forth every day, just to be able to crash in my own home every evening. But John has convinced me that the most "stressless" thing would be for Noah and I stay in the 'Ham. John will be able to come down on Tuesday evening and stay through Thursday morning, which will be great.
I spoke with a sweet friend who unfortunately has experience with a child undergoing radiation, and she has graciously re-lived those awful memories in helping me to prepare for what will happen over the next 6 weeks. It seems terrifying, and unimaginable, but then again, so did the last year and 2 months, and we survived it. So, each day I will tell myself (as we count down every treatment with a super-fun sticker chart!) that we take one day at a time...because He will give us strength for each day. And we will just do this, and blast every bit of that cancer from Noah's amazing little brain. You know, since Noah got sick I've known that this would be hard, and I've known that statistics weren't on his side. But if you've ever looked into his eyes you will see a pure, honest, fighter with curiousness and love just oozing out of every pore on his body. He is honestly one of the most stubborn kids I've ever met and DOES NOT give up easily. So we can do this, with God's strength and favor and with your prayers and petitions...we can do this.
I've seen some posts and comments about it not being fair, and about people being sorry for us. And I've thrown enough pity parties for us all over the past 5 days, but I'm done with that now. (Someone remind me of that statement in week 3 when I'm severely tired of it all!!) Wednesday I was walking through the galleria mall trying to get to the carousel without crying. I looked at moms, their kids, families, elderly couples...all the while thinking, it's not fair...why can't we just be normal...why does MY kid have to have cancer? I won't know the answer to those questions, but I do know that no one has a "normal" existence (and what defines normal??). Everyone has their something that causes them pain and difficulty in life. That mother I saw sitting with her family, feeding her new baby...the elderly couple that walked hand in hand...the teenagers waiting to ride the carousel...the businessman in a suit rushing through lunch to his next appointment...they all have their something, and every something is just as real and painful as the next person's. So I appreciate all of you with your own somethings helping and praying for my family in ours. We may come out on the other side looking and feeling like we've been beaten with a baseball bat, but we will come out on the other side, nonetheless.
I'm posting a video below that I think is worthy of watching. Thank you for seeing our story and following our struggles, and helping us through them. Noah will have another MRI along with a lumbar puncture on Tuesday - please pray and believe with us for no other growths or free floating cancer cells. We will update those results as soon as we can Tuesday.
"So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand" (Isaiah 41:10).
Over 3000 people visited this site yesterday. We are totally blown away by the love people have for Noah. We have received so many great words of encouragement and support from so many of you. Thank you for your love!
Jessica woke up feeling really bad and went to the family doctor this morning to see what was going on. Turns out she has strep. Please pray for her, (and Noah and I as well).
The gears are turning down in Birmingham as Noah's social worker is trying to get us temporary housing. So many families have similar situations at Children's Hospital and temporary housing is very limited. I hope he can find us a good spot to land over the next six weeks. We really appreciate his hard work. Pray we get a room.
We have not lost hope, we have not lost faith. We don't understand why, but then - does anybody? What we do know is that we have today. That means - ice cream for lunch, cake for dinner, and whatever we can do to make us laugh.
spread the word - pray for Noah
Today started very early. We woke at 5 and were on the road by 6 on the way to the hospital. We are so thankful to our church family for putting us up for the night in a hotel so we wouldn’t have to drive down this morning. We didn’t have to wait very long for the MRI. Noah was first on the list, and that was a huge blessing. These kids cannot eat or drink anything after midnight before the MRI and sometimes the wait can be all morning and into the afternoon depending on what emergency’s come up at the hospital. He was in the MRI before 7:15 AM.
He went in so brave. Jessica had a good talk with him about what was going to happen. He went into the “big tube” room and didn’t even whimper. When the process was over he began waking up to the sounds of the next patient fighting the nurses and screaming. It was pretty scary for him and he wasn’t very happy by the time we got to him. It is amazing what a mothers hug and a little sprite through a straw can do!
We were escorted by the radiology nurse to the oncology clinic and placed in a room. We waited around two hours before Noah’s doctor came in. During that wait we had good conversations with Noah’s new social worker Wes, and our favorite chaplain, Paul.
When Dr. Reddy came into the room, we were not ready for what she had to say. The MRI showed that the tumor that had been removed twice has now grown back again. It is 1 ½ cm in size. That is bigger than the last time it was discovered. The treatment Noah has been on since December has not worked. Dr. Reddy does not want to do another surgery at this time. Instead since Noah is so close to being three years old, she wants to try radiation therapy. She thinks that right now it’s our best shot.
Noah will have 30 treatments, One every day for six weeks excluding weekends. All of these treatments will happen in Birmingham at the Children’s Hospital radiology department. Tuesday February 2nd, he has another MRI. This will be longer than the one he had today. He will get the complete head and spine scanned as well as having a spinal tap (LP). The spinal tap is to look for “free floating” cancer cells. It is a precautionary procedure. We want to make sure that the cancer is only in the brain. A spinal tap will let us know if it is anywhere else. After the MRI we will meet with the radiation oncologist. Noah must be fitted for a mask he must wear during the treatments. He will be put to sleep for every one and the mask will keep his head perfectly still in the same position every time so that the area targeted will be treated. The treatments don’t last very long. They estimate about ten minutes for each treatment.
Our social worker is working on some temporary housing for us. Jessica and Noah will stay in Birmingham and I will go back and forth to Athens for work. It doesn’t sound very fun but it’s what we have to do. We are fortunate to have great caregivers so close.
We left the hospital today in a daze. We headed down the road to one of Noah’s favorite places, the Galleria mall. It has a carousel. We rode the carousel and Noah had a blast. He named his horse “Yee Ha!” We got off and sat down to eat. None of us were hungry, but we needed something in our stomach. As we sat there we saw Christy Steltenpohl, and she walked over to our table. Christy is the mother of Lindsey, a six-year-old brain cancer patient at Children’s who is presently going through radiation. ( www.caringbridge.org/visit/lindseysteltenpohl )The exchange between the two moms was tough to watch. Two moms with kids who are fighting cancer, facing tough odds, who can't think of anything to say to each other. The only thing they could say to each other was “This really sucks!” – well said.
We don’t know what the days ahead have in store. We know it is going to be hard. We also know we are not alone. Thank you, reader, for caring about and loving Noah enough to keep up with this blog. To be honest, I hate this blog – every time I have looked at it in the last few months, it reminds me Noah has cancer. In the last two months, Noah has grown a full head of hair and been home more than any time in the last twelve months. If it weren’t for the two outpatient treatments a month, I would say he (and us) have got to be “normal” for a short period. It has been nice. Just the other day someone saw him running and yelling and said, “You wouldn’t know anything is wrong with him” That is now over. Noah will once again loose his hair; he will once again get nauseated and be away from home and all the people that love him. Jessica and I will once again be separated and stretched.
I said I hate the blog, but I am also thankful for it. I am thankful for the encouragement we have received from you and all the support. I am thankful so many people know Noah’s story and so thankful so many people, like you, pray for him. Please continue. Please don’t stop. Ask everyone you know to pray for our little boy.
We have an MRI time for this Wednesday (1/26); we are to be at One-Day Surgery at 630am, which means his MRI will be around 730-8am. This is great news because Noah shouldn't have to wait very long without food or drink and we should have results back even before he begins his treatment. Thank you so much for praying for us, especially Noah, and we will update the site as soon as we get information and get to a place where we can do so. God bless!!
Well, it's been almost a month since my last update and not much has changed. We had a great Christmas holiday season and had to clear out old toys to make room for the new ones. Noah got his "big bike to ride on" and I will have John post a fun video of him riding his gift from Santa. As far as Noah's condition, he is doing well as far as we can tell. He looks great and still has only a few side effects from his treatments. He started pre-school a few weeks ago and is enjoying his new class. I do have a few specific prayer requests: Noah has an MRI scheduled for next Wednesday, January 27. I don't have an exact time at this point, but it should be in the morning. He will go from MRI to his clinic where he will receive his sixth treatment from his new protocol. John and I are trying to be as confident as we can that he will get a great report and the scan will be perfectly clear, but there is ALWAYS a lingering "what if" that hangs out in the back of our minds. We need the Lord's comfort and control of our anxieties during this scan. Like I mentioned before, Noah seems to be doing really well - he appears to be a normal (almost) 3 year old with a very short haircut - but I have been struggling emotionally. I've heard that this is common, but anytime I see a picture or video from any past treatments or surgeries, or even if I think on it for too long, I feel an even greater emotion than I did at the time of the occurrence and wonder how in the world I was able to keep it all together at that time. It's very frustrating to not be able to control those emotions.
As always, we are very appreciative of all the prayers and help we've received, and we thank you also for continuing to follow Noah's progress (as much as you can with my infrequent blog posts!) and most of all for praying for his healing. We have pictures I will post tonight, from Christmas and with more hair. (Pictures below)
There are a few families we are keeping constantly in our prayers and hearts; please join us in praying for little Lindsey who has been given several months at most and needs a complete miraculous healing from the Lord, for little Joel who has an MRI the same day as Noah and has been fighting really hard for the past year, for Garon and his wife Katye as he is undergoing testing for seizures and waiting for his next brain surgery, and for sweet Emily who recently said goodbye to her young husband who for several years fought a rare cancer called Rhabdomyosarcoma.
A friend sent us this link to a great song of encouragement that I'd like to share; it really describes the attitude of my heart the past year - through the pain and trials of life we never leave God's hands as long as we are seeking His direction. John often says that He never promises us sunshine and rainbows, in fact he promises that we WILL have trouble in this life, but hallelujah He overcomes this world. Keep the faith even when it hurts. We love you.
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.