Noah had his first radiation treatment this morning. We arrived at the UAB Radiation Oncology building at 7:00 AM. Noah was greeted in the lobby by Dusty, a 9 year old shih tzu that is part of the 'Hand in paw' dog therapy program here. Children are scheduled for treatment first every day and the hand in paw program has a dog in the lobby every day for the children to enjoy while they wait.
Noah was a little scared at the new surroundings and all the new faces as we made our way down the hallway toward the treatment room. Once we were inside, he settled down. He has his port accessed so putting him to sleep was a breeze. He went to sleep and they immediately began the process of positioning him correctly and placing his mask over his face and chest. Noah will never be awake during this part of the process, so he will never know or remember being bolted to a table with a mask over him. Thank God.
Once he was secure, everyone left the room and a very large door, over a foot thick, closed him in. I was able to stand at the operator's desk and watch as they positioned the machine in just the right spot. Four cameras monitored his every move and we could hear him if he made any sounds. Once everything was correctly positioned, they began his first dose of radiation. This part of the treatment only lasted two minutes. Once it was over, Noah was awakened and brought to us in the waiting area. He was very loopy but wasn't crying or unhappy. We waited about ten minutes then he had a vitals test. Everything checked out just fine and we were released. We came home and Jessica made eggs, grits, and toast. We sat and watched "Super Why," one of Noah's favorite shows and ate our breakfast.
Jessica has made a chart for Noah to put stickers on marking off each day of his treatment. He has picked out his favorite characters to go on the poster. Spiderman made it to the first block. : ) He also gets a sucker after every treatment. He loves that part!
We want to thank everyone who has helped us in this new chapter of Noah's journey. Many of you have sent encouraging cards and notes to Noah, me, and Jess. Many of you have made financial contributions to help in Noah's expenses and we have recently heard of several fundraisers people and some organizations are putting on in Noah's behalf. All of this support has been such a blessing to us. We cannot say thank you enough.
Noah has another treatment tomorrow, then he and Jessica will come home to Athens for Friday and Saturday night, then return to Birmingham on Sunday.
Please continue to pray for Noah's healing and all the other children who suffer with cancer.
Spread the Word
Pray for Noah
Noah and I are settling in our new "home" tonight. John will be here for a couple of nights with us, and will thankfully be present at Noah's first radiation treatment on Thursday. Noah and I went grocery shopping - quite a larger feat than in the small town we are from where it takes 5 minutes to get to "the Walmart" down the highway. It will take some time adapt to the way of life in the city; the traffic, the parking, the TRAFFIC...but we can do it!
Tomorrow morning he will begin his tumor-starving therapy again, with the radiation treatment beginning on Thursday. The radiation is Monday through Friday, but I’m not yet sure of the frequency of the other treatment.
Ok, so I’ve had some texts with questions about the Make-a-Wish visit - sorry I’ve kept everyone in suspense. The visit went well; two volunteers from the North Alabama area came to the house on Sunday afternoon and brought Noah a toy 4-wheeler, so they were instantly his friends. We are so grateful that they gave almost 2 hours of their Sunday afternoon (Super Bowl Sunday, at that!) to spend with our family. They had Noah color a picture and asked lots of questions to try to find out his interests. He wasn’t as sociable as he usually is, and didn’t give up very much information, possibly because he was really distracted by all his toys in the house, and it was nap time. But we had a good visit, learned a lot about Make-a-Wish and the possibilities of his wish (which are almost limitless). It really is amazing what this organization, through it’s volunteers and donors, has done for so many families. After an hour and a half of trying to coax a wish from Noah, the adults decided on some options for him. Swimming with the dolphins is out because he is too young. His new favorite show is “Yo Gabba Gabba,” so meeting the characters/attending a recording of that show is an option. My personal favorite potential wish is Give Kids the World, which is such a cool place for children with life-threatening illnesses to stay while touring the different theme parks in Orlando. The third option is an amazing tree house/play house area in the back yard. Noah would be super stoked about any of these, so we will soon see which one he will receive. The next step in the wish process is finding a sponsor for Noah, and moving forward with the logistics of the wish. Fortunately, a school in Marmaduke, Arkansas has voiced interest in financing Noah’s wish. My aunt teaches at a school near Marmaduke and word of Noah’s story has spread in her area also. We are praying that everything works out with the sponsor and after his radiation is completed he will get his wish!
Thanks again for your prayers of faith for Noah, please keep them up; we need them now more than ever. Believing with you for a miracle for my sweet boy.
It is just after noon and we are already home from Birmingham; I believe this is the shortest trip we have ever made down there. Noah had his port accessed this morning at Children's and then we headed to UAB radiation center to have his scan and mask made. He woke up from the anesthesia a little quicker than I could get to him, so he wasn't happy about that but otherwise he did great. His treatment will begin a lot quicker than we expected - this Wednesday he will resume his tumor starving therapy and then Thursday morning he will begin the radiation treatments every morning (M-F) at 7am. So Noah and I will be officially "moving in" to the Birmingham apartment on Tuesday evening. It's a nice place, built in the 40s, plenty of space for our necessities, neat and clean, and only a few minutes drive from the treatment center. God is really providing our needs during this time, and we thank all of you who have contributed in some way or another!
I've been trying to teach Noah about his wish - what it means, what he could possibly do or have, and how endless the possibilities are. At first it was hard to distinguish the wish from a "witch" (he loves watching the Wizard of Oz and couldn't get past his wish being "mean and green"). I think he is finally understanding the concept and is trying to decide what he would most like to do. He talks a lot about swimming with sharks, but somehow I don't see that one coming to fruition. :) I will post more after our meeting with the Make-A-Wish volunteer on Sunday. Thanks so much for still reading and praying!!! Have a great weekend!
We met with Noah's radiation oncologist on Wednesday afternoon to discuss his treatment. During the meeting we found out that the LP results were clear and there is no concern with his spinal cord, praise God! So the radiation will focus on the cavity in his brain and really hit where the new growths are located. Noah may be receiving some additional chemo/tumor starving therapy during the weeks he gets radiation; Dr. Fiveash said chemo often aids in the effect the radiation has on the tumor. There are some risks involved as with every other treatment Noah has had, but the greatest concern we have today is saving Noah's life. I've mentioned before that Noah will have another MRI once this treatment is completed; what we need to see is a scan that looks the same as this last one. Our doctor explained that when the radiation works the growth will die, but not change size...it's not going to disappear. Please, plead with the Lord on Noah's behalf that He will use these amazing doctors, nurses, and technicians to heal our little guy.
We drove back home to Athens late last night, and will be driving back to Birmingham for a simulation appointment on Friday morning where they will do a mapping scan and make Noah's mask. His treatment won't begin until about 10-14 days later.
Because of Noah's circumstance the Make-A-Wish Foundation has been working quickly to grant him a wish. They are coming to our home this Sunday afternoon to talk to him about his wish, so I hope he is able to communicate to them what he most would like to have or do.
I will post more after our appointment tomorrow...happy weekend to everyone! Thanks for your prayers and support.
We arrived in Birmingham last night. We have been given a place to stay by the Homewood Church of Christ here in Birmingham. They own a series of apartments and offer them to families with medical crisis free of charge. It is a very nice place and we are so blessed to be here.
We received so many offers from some amazing people of places to stay during this new treatment. Thanks to all of you for opening your heart to us.
Noah had another MRI this morning and a spinal tap. The Doctors are looking at his spine and spinal fluids. Our hope is that the cancer attacking Noah is only in one spot. If it is spreading, the spinal tap will reveal it and the MRI will show where.
Currently we are in limbo. The scan came back with a few questionable spots on his spine. They are comparing todays image with Noah's past images and also passing them on to some colleagues for their input. The spinal tap usually takes 24 - 48 hours to get an answer. So we have a long night and day of waiting. We had hoped for a routine scan and an "all clear" report. We still hope to hear the all clear.
Our appointment with the radiation oncologist is tomorrow at 3:00PM. He will explain the process and answer all of our questions. After this initial meeting, they will schedule us for a "practice run" where they will put Noah to sleep and fit him for his mask. From what we have heard from other patients, it is a hard mesh cast that goes from the top of his head to his chest. Noah will be put to sleep everyday and the mask will hold him perfectly still during the treatment. If anything is found in his spine, he will be treated in both head and back with radiation.
On a lighter note, Jessica discovered that the D.I.Y. network, Food network and HGTV network are all beside each other on the cable down here. I heard her say with delight, "Oooo" at the discovery. Noah has his toys all over the floor and is singing every song he knows. As abnormal as this chapter in our life is, some things don't change : ) I saw a sign in the mall today (after we got off the carousel) that said "happiness isn't a destination, it is a decision." Not sure if I have settled into agreement with that statement, but I do know that even in the worst of situations, there are still reasons to smile, moments to laugh, and joy to be had.
Spread the word, Pray for Noah
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.
Here is a long overdue update! Noah has had three treatments with his new protocol and he is doing well. There have been no serious side effects, with very little visible side effects at that. His appetite decreases a little after each treatment, and he seems a little more irritable for a few days after, but it is nothing compared to the other treatments he received. We are so glad that we have to go every other week for an outpatient infusion instead of spending at least one week every month in the hospital. Staying at length on the hem-onc floor was taking its toll on me, and I worried constantly about John driving from Athens to Birmingham so many times a week. Noah no longer requires a daily shot to boost his blood levels or weekly lab tests. This new treatment is definitely better, but still not without concern. Because there are no side effects, John and I find ourselves wondering, is this working? Will this help to keep this tumor from coming back? Noah is due for another MRI at the beginning of January. We don’t have a scheduled date yet, but please begin praying now for a good report and for John and I not to worry too terribly much about it.
Our family has had a very good holiday season so far and we expect that to continue. We had so much to be grateful for this Thanksgiving; the one year anniversary of discovering Noah’s tumor was November 21. I am just ecstatic that one year later he is doing so well. He is still developmentally on track and loves going to his nursery class at church to play with his buddies there. He runs pretty fast, is talking a mile a minute (some words are still intelligible but that will develop with time), and he can play the heck out of a drum set. This Christmas season has been great since he understands more about Santa and how that situation works. Last year he didn’t want to even be near Santa. (Bless the sweet “Santa” who paid us a visit at our home last year shortly before Christmas - Noah ran crying from him!) This year he mustered enough courage to sit with me while sitting next to Santa, and told him he wanted a “big truck to ride on” for Christmas. I do believe Santa will be able to fulfill that one request.
John and I are proud to announce we just celebrated our five year wedding anniversary. I jokingly tell people it feels like ten, in some ways good and in some ways bad. We have had to deal with some difficult situations that could have threatened our marriage if we hadn’t taken measures to protect it. Many of you know the strains that life in general can put on a relationship, and some of you know what happens when you throw a sick child into the mix with lots of stress and traveling and separation from one another. We enrolled in an 8 week course called Dynamic Marriage, which helped us to place a much needed focus back on each other while caring for Noah. It was very effective for us and we recommend it to any couple that is, well, married!
Lastly, I have to write about an experience I had while Christmas shopping last week. I’m sure a lot of you have noticed that many stores are accepting donations for St. Jude’s Hospital, among other organizations. I was in a particular store that was supporting St. Jude’s, and a customer in the check-out line in front of me was asked if she would like to donate. Her response, with a laugh, “No, Honey. I’m not at St. Jude’s.” She continued to talk about how all her purchases were for her, and it’s “all about me.” I felt like she had slapped me in the face. I was angered, red-faced, and wanted to tell her what horrible things I thought about her. I got so discouraged, thinking, five dollars, lady…that’s all it takes. Even one dollar. You just spent two-hundred and you can’t give five to a child that is dying. I left the store in tears because I realized how many selfish, uncompassionate, self-serving people are in this world. And then I remembered you, reader. I remembered how many letters of encouragement, donations, gifts for Noah, offers to clean my home, gift cards for dinner, acts of kindness, blood donations (I could go on) that were given to my family in honor of my little guy, and I praised God for you. I then decided that for every person that feels no need to help support a sick child and his/her family, there are at least 200 more that make the decision to give. That has to be the ratio, based on the love and generosity my family has received. After much thought about that one woman, I prayed for her, asked forgiveness for thinking the horrible thoughts I did about her, and moved on.
So thank you all, again, for helping my family through a very difficult time. I pray God will return the blessing to you times one hundred. I pray you have the most amazing Christmas season, and that you know joy, peace, and comfort in the midst of whatever it is that is trying to steal all of the above. Even though the world seems to be dying at times, I think about people like you - who give - and I see that His Spirit is still alive. Merry Christmas and much love to you all.
We have made it through Noah’s first new treatment. We arrived at the hospital this morning by 8:45 and were in at the clinic before 9. Noah had a very good attitude in the waiting room. Jessica did a great job explaining what was going to happen today last night to Noah before he went to bed. When it came time for his port to be accessed, he did it like a champ – not even a whimper. We were able to stay in one of the exam rooms for the entire time of the treatment. Noah only received 1 chemo drug and one tumor starving therapy treatment today. Before these drugs they gave him Zofran for nausea and Imodium for diarrhea. So far they have worked. While the machine was pushing the drugs in, Noah was able to play in the floor with a few toys, take a nap and play with the ipad. The only side effect we have seen so far is that he made sounds and gestures that he had a bad taste in his mouth, which is common in chemo, and he wouldn’t eat dinner. Jess bought him an m&m cookie and he wouldn’t even eat it. I hope we can make it through the next few days without him throwing up. That would be great.
His doctor is confident that he will not become neutropenic. He will only have his blood checked once next week, and that is a blessing. His treatments will be every two weeks. We should be on our way home as soon as they are in his system. This new way of treatment is a relief to Jessica and I and especially Noah. We have grown accustomed to being home in the last few weeks. I am glad that isn’t going to change (hopefully).
In four days it will mark the one-year anniversary of when we first heard the horrible news about Noah’s condition. It seems like a lifetime ago and it seems like yesterday all in the same thought. So much has happened in his life in the last year. He has been such a champ through it all. I can still remember the day in 1997 when God put it in my heart that I would have a son and that his name should be Noah. The moment Jessica told me she was pregnant I knew it would be a boy. I know that his life, like all of ours, has purpose. He will be a righteous man in an unrighteous generation – that is why I feel like we were to name him Noah. To some I bet that sounds weird or flakey, but it is my reality. I have questioned so much in the last 12 months. I have given into doubt at times and have been angry at God as well. But through it all there has been so much evidence that God's hand is on his life. I can’t explain it all, and don’t want to try, but I know that Noah’s life is in God’s hands and so far He has decided to keep him here. I hope he decides to keep him here for a long, long time.
Please keep him in your prayers. Please specifically pray that this treatment would finish the battle with cancer and that Noah would suffer no long-term effects for the rest of His life.
We take the blessings we have in this life for granted until we are threatened with the possibility of losing them. Hug your children and kiss them goodnight. Make time to spend with them. Take advantage of the time you have now and don’t wait. You aren’t promised and have no guarantee that your loved one will be here tomorrow. Carpe Diem!
I finally made the dreaded call today to Noah's oncology clinic and we are scheduled for Noah to start his treatment this Wednesday (11/17) at 9am. As I mentioned in the last post, this is a different protocol than the previous one. He will receive the treatment about every 2 weeks for the next six to twelve months. The side effects of these new drugs are somewhat similar to the others, but less severe, so we've been told. Of course there are always potential serious side effects with any drug, but the chances of that happening are very low. Dr. Reddy believes that Noah will no longer need to be admitted for fever/neutropenia as he has before since these drugs shouldn't knock his immune system down so much. The treatment on Wednesday will be in clinic; he should be finished before Wednesday afternoon.
Over the next few days please remember Noah in your prayers as John and I begin to explain that he will start getting his "medicine" again, begin his shots again, etc. Pray that his body will not have any negative reaction to the new drugs, that the side effects will be minimal if at all, and that they will WORK. I'm sure you can imagine my biggest fear...but I'm continuing to push that fear aside and believe that through this last surgery and the new treatment Noah will be healed. I've had several people ask me, REALLY ask me, in the past few days - "how are you Jess?" And to be very honest, I am tired. Before Noah's tumor recurrence I had complete confidence that he would have finished treatment before Christmas and wouldn't need any more. I was praying, "Lord just get me through December." Now I've had to change my prayer to, "just get me through this Wednesday." I'm trying not to think about another year of treatment, but just getting from day to day. So if you want to pray for me also, please pray for strength, and peace, and rest. Not just sleep, but emotional rest and freedom from stress. I haven't done a very good job at managing that lately. I didn't mean to get so personal, just thought I would give a quick Noah update. I will post again after Wednesday's treatment, either Wednesday night or Thursday morning. Thank you for continuing to follow us and to God be the glory!
* John preached this past Sunday at our church; if you would like to watch that message you can do so here. I'm very proud to be his wife and I am thankful for the work God does in his life. :)
Well, I was supposed to post an update last night but I failed to do so because…I fell asleep. So sorry. Our meetings yesterday were once again overwhelming and filled with information that John and I will have to chew on for a while before we make a decision. Noah’s neuro-oncologist was very glad to see him doing so well. She had nothing but great things to say about his appearance, how the incision is healing, his energy level, and his speech, everything of that nature. However, she has chosen a course of treatment that she would like for him to try for at least 6 months and possibly for one year. Due to the aggressiveness of this cancer, there is a huge chance it will come back. She is worried that if we do nothing but wait from MRI to MRI, that he will have another recurrence. The two drugs she has chosen (through research and discussion with her colleagues) are Irinotecan (CPT-11), a different chemotherapy drug, and Avastin (bevacizumab), which is not a chemotherapy drug but a fairly new tumor-starving therapy designed to block the VEGF (Vascular Endothelial Growth Factor) protein that is produced by normal cells and overproduced by cancer cells. Because Avastin is a new therapy, long-term side effects are not known. As I understand, this drug has never been used on anyone with Noah’s diagnosis. John and I are still learning about these two drugs and have not made a decision yet.
I believe I have mentioned before about Li-Fraumeni Syndrome, which some of my family members have and Noah and I were assumed to have based on family history. A blood test confirmed that Noah and I do have the syndrome; my sister tested positive for the defect about 2 months ago. With Li-Fraumeni Syndrome there is a defect on a tumor suppressor gene (p53) that will allow tumor cells to grow uncontrollably, whereas someone without this defect is able to recognize the cell growth pattern and destroy most rapidly growing cells. Because of the defect, a person with Li-Fraumeni Syndrome has a much greater chance of developing a tumor/cancer than a person without the defect. Noah, my sister, and I will need to have preventative scans and tests done for the rest of our lives. Women with LFS are almost guaranteed to develop breast cancer before the age of 60. Some even undergo preventive mastectomies to greatly reduce their risk. There are several different cancers that are associated with LFS: brain, breast, and soft tissue sarcomas to name a few. Children with choroid plexus carcinoma are tested for LFS regardless of family history because of the correlation between the two. Noah has brain cancer because of this defect, and for the rest of his life he will be susceptible to forming other cancers, and that is a lot to think about along with my own susceptibility. We have many lifestyle changes to make as cancer can occur from environmental factors as well. We ask for your prayers as we make positive changes and remain confident in God’s will and promises.
Needless to say, when someone asks “how did it go?” regarding our visits yesterday, it’s hard to answer that question with a simple, “good” or “bad.” We are completely blessed that Noah is doing so well right now, but this battle is far from over. I wish I could write to you that Noah is in “remission” and we are stopping treatment. I wish I could guarantee that he will be free from cancer for the rest of his life – but I can’t. I am writing this only to inform and not to foster sympathy or for you to feel sorry for us…but so you know how to pray. God is so good, and this battle is not only ours but His…and in that we find comfort. The Lord can heal Noah through a number of means, but whether that is in this life or eternity we cannot say for sure. We are not promised tomorrow and we don’t know what a day will bring forth (for ANYONE), so we live each day to the fullest and spend as much time together as we can. Over the past 11 months John and I have become very intentional in how we spend our free time and how we view the time we spend together.
I have more to say, but am going to be late for an appointment if I keep writing. Thank you for your continued prayers and encouragement, and I will post more soon, especially as we make decisions regarding Noah’s treatment.
"But may the God of all grace, who has called us to His eternal glory by Christ Jesus, after you have suffered a while, perfect, establish, strengthen, and settle you. To Him be the glory and the dominion forever and ever. Amen." 1 Peter 5:10-11
Just a reminder that tomorrow at 8:30am is our meeting with Noah's oncologist. Please be in prayer that Dr. Reddy, John, and I will make the right decision regarding Noah's treatment. We are also meeting with our genetic counselor tomorrow afternoon. We appreciate your prayers for wisdom and discernment and will update tomorrow with the outcome of our meetings. Thanks!
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.