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Tuesday 3/30/2010 at 7am please stop what you are doing and say a prayer. Doctors will be taking Miss Ava for her biopsy at this time. Please pray that the Lord will give these doctors wisdom and that the procedure will go well. Together we can pray towards a miracle for the sweet girl who has captured all of our hearts!!
Wednesday 3/31/2010 Miss Ava's biopsy and MRIs went well yesterday. She was up and recovering last night. We continue to pray as results from the biospsy hopefully come today. Please keep Ava in your prayers.
Wednesday 3/31/2010 "We did not receive the news that we were hoping for today. It turns out it is not PNET but a Glioma. I think this has made us even more determined to win this battle and with God and everyone on our side, we know it can happen! We won't know until tomorrow what the next step is for us" - Traci Nichols
Friday 4/02/2010 - Traci, David, and Ava are home for the weekend. They are looking forward to a relaxing Easter weekend at home with their little girl. Please contiue to pray as they prepare to battle this cancer head on and defeat it.
Monday 4/05/2010 - " We had our consultation today with the Dr who will be performing the radiation if we choose to go to OSU. Ava has to go back to Childrens and have her port put in tomorrow...now we have to explain that to her...Lord give us all the strength we need. Love to everyone." - Traci Nichols
Wednesday 4/07/2010 - " David and I made the decision today that we are taking Ava to St Jude Hospital in Memphis TN. We will be leaving tomorrow night at around Midnight (so hopefully she can sleep a good ways through the 12 hour drive). We will be located down there for the duration of her radiation, so at least 6 weeks. We followed our guts and our hearts and we don't ever want to look back and have any regrets, so we are going to try a Phase I Clinical that she was accepted into. " - Traci Nichols
Wednesday 4/14/2010 - "Hello everyone, it has been a long day but I wanted to let everyone know that Ava's first radiation and chemo treatments went really well! She even woke up happy from her radiation sedation (and ate 7 oreo cookies when she woke up!-she hadn't eaten since last night and it was 3pm!) They asked David and I if we wanted to watch the radiation treatment, so David is watching tomorrow and I am watching Friday. I'm really nervous about watching- I don't want to see her sedated and in her mask, but I also want to know EVERYTHING possible about what is being done to her. I will keep you all updated more, but so far, the treatment went good! Love to you all and God Bless!!!!!!!!!!!!!!!" - Traci Nichols
Thursday 4/22/2010 - "I am thrilled to tell everyone that Make A Wish called me today and my beautiful Ava is going to get to meet her Idol on May 8th! They are sending us to a concert in IL and then she will get to meet her!!!!!!!!!!!!!!!!! THANK YOU to everyone who helped in anyway, you guys are so amazing. Like David put on his post, we beam with pride when people ask us where we are from and we proudly say Waterford, OH. Our community-heck, the entire world- has been amazing to us! We love and appreciate every single one of you more than you will ever understand! Love to you all!" - Traci Nichols
Tuesday 4/20/2010 - "They are still trying to customize her radiation and sedation for her-seems to be some trial and error that they have to do. We have not seen any side-effects, that we have noticed, from the Chemo yet either (fingers crossed), except for her blood pressure has been a little high (therefore, add another Rx to the bag). I know we are only 5 days into the treatment, but so far so good." - Traci Nichols
Wednesday 5/5/2010 - "Another update for Ava: We are getting ready to start our 16th day of Radiation treatment. Ava has been holding up fairly well. She has had her sick moments, but overall, it has not been too bad. She is a real Trooper! She is in good spirits most of the time and has more of a WILL & DESIRE to try and be more active. We are doing Physical and Occupational Therapy each 3 times a week. She actually fed herself all of her lunch yesterday with a fork, has taken a few steps without us holding onto her and actually walked up about 20 stairs with our assistance. We are seeing very very slight improvements, but each one just gives us more hope. Our last day of radiation should be the 25th of May!!! Thank you all for our prayers and support! LOVE to you all!" - Traci Nichols
Wednesday 5/10/2010 - "Good evening everyone:) We just wanted everyone to know that Ava had the experience of a lifetime at the Taylor Swift concert last Saturday. We got to be at the end of the Meet & Greet line, so we were able to spend a little extra time with her. (legally we are not allowed to post pics-I'm SO SORRY! I want to share the...m all!) Ava truly enjoyed the concert and the entire night was just perfect. We are so blessed that she will forever have that memory! She is still having her rough days every now and then, still tired alot, but spirits are doing good." - Traci Nichols
Wednesday 5/10/2010 - "Unfortunately she is not walking without assistance (like we read in the Times article) but we are just trying to get the strength and balance back in those little legs. We are slowly decreasing the steroid dosage, which is wonderful. We are counting down the weeks now until we are able to go home. Ava says that she misses "Waterford Ohio":) Thank you everyone for all of the Mother's Day wishes. I had the best weekend and the absolute best gift that morning when Ava hugged me and told me Happy Mother's Day-she had remembered all by herself. I just broke down in a happy cry. God bless you all and we Love yoU!"- Traci Nichols
Thursday 5/20/2010 - "We took away another 1/2 of a steroid pill today. Slowly but surely. We all just wanna come home. We want to see everyone, our house, our pets, just everything. I can't wait to sit on my porch LOL! I am coming home this weekend to be in Michelle's wedding and I am so excited, but feeling so guilty for leaving them for 24 hours! I am just so lucky that Ava has a wonderful Daddy in David so I don't have to "worry" about them and I know he will take great care of her! They will probably have a blast, he always gets into something fun with her;) We love you all!"- Traci Nichols
Thursday 5/20/2010 - "Good evening everyone, it was mentioned to me that I hadn't updated lately, so here we go! :) We are coming up on our last day of radiation, May 25th! After that, we will be getting an MRI (hopefully the next day) and then get to go home after that! We will hopefully get a good indication if the tumor has shrunk from this MRI, but will have a better indication on the next one in August. Ava will continue her Chemos at home daily for up to 2 years. We will be making trips back to Memphis every few months for MRI's and check ups, and seeing our pediatrician on the months that we aren't coming down here. Ava is holding up well, she is physically stronger now than she was when we came down here. Physical and Occupational therapy have been great for her. It isn't the improvement that I was hoping for, but as long as it is forward and not backwards, I am happy."- Traci Nichols
Monday 5/31/2010 - "I FINALLY got my computer up and running this morning-I couldn't get hooked to the internet. I'm so sorry that this Update is long overdue! anyway...We are HOME and Ava is so thrilled! Her spirit has improved incredibly and she seems to have so much more desire to try and physically get better. When we were at Memphis, David and I had to beg her to try and walk just to the elevator and now she is WANTING to try and walk everywhere (of course with our assistance). Just seeing her with her friends brings tears to my eyes. Any worries that we had about how the kids would react has flown out the window-they have been Amazing!... Her MRI results that we received last week showed that the radiation had shrunk the tumor some, the front of it more so than the back. Considering some don't shrink at all, we will take anything. We are still taking her Chemo 2 times a day-hoping that it will help it from growing back. We have Dr appts locally this week and we will be going back to Memphis at the end of July. We are all also very excited to head for our beach vacation this next weekend-boy is a vacation needed! We hope to completely be off of the steroids this week also! We love you all and it feels wonderful to be back in Waterford with our entire community behind us! Thank you to Everyone who did anything that helped us out while we were gone-we appreciate it so much. Please keep praying-Love to you all!"- Traci Nichols
Monday 5/25/2010 - "Ava is currently in her LAST radiation treatment! We have a few more PK blood draws today, so we will be here for a long while...then we are packing tonight! We have the MRI tomorrow. I am so excited, nervous, and everything else. I sorta feel like this is like waiting for the results of the first MRI all over again. We love you all and can't wait to get back to good ol WATERFORD!"- Traci Nichols
Thursday 6/03/2010 - "I'm getting ready to wake Ava up and get her ready to take her to Children's in Columbus. We are getting Lab work and an EKG done today. I sat her down & explained that we wouldn't have to stay, but I just hope she remembers that when we get there. We decided that we felt better going to Children's to access her port, since they put it in. It is worth the drive to go to people who are familiar with Pediatric ports. Love to you all!"-Traci Nichols
Thursday 6/03/2010 - "Ava just took like 6 steps by herself with Daddy tonight!!!!!!!!!!!! and then she stayed up so she could show me over and over again! She is going to do it, I just know she will get to walking again! Such a good night and Mommy is on CLoud 9!!!!!!!!"- Traci Nichols
Sunday 6/13/2010 - "Good evening everyone-It is so nice to start settling into being home now:) Ava has been trying to walk more and more ever since we got back from the beach. She wants to do it so badly! She has been doing pretty good, but we had a rough evening. She couldn't seem to keep her chemo down. We had weened her off of the nausea med, but I think we will be going back on that for awhile. We will be hopefully starting Physical Therapy asap in Marietta and are going back for more labs @ Childrens on Wed."- Traci Nichols
Sunday 7/26/2010 - "Well, BIG week ahead of us. We leave for St Jude tomorrow, our flight leaves Columbus @ 5:45. Our first appt is Tues and we will have the Brain MRI that late morning/afternoon. We have appts all day Wed. with a Knee MRI and will fly back Thursday morning-hopefully with WONDERFUL news. We thank you all for your support and prayers, please keep them coming. Love to you all and God bless. I will post an update as soon as I can.."- Traci Nichols
Sunday 7/26/2010 - "Here's a cute lil story: I took Ava to the mall a few wks ago and got her some pizza that she was holding on her lap in her stroller. We were standing in line for my food when she says "Mommy, everybody is looking at me". I brace myself, I think, this is it, the conversation that I have been dreading. I squat down to her and say "honey, why do you think that they are looking at you?" Ava looks around at them, back at me, to them and back to me again and says..."I think they want my pizza". I just smiled and tried not to cry and said "you are exactly right baby" :) Love the innocence!"Traci Nichols
8/24/2010 - "Washington County Fair Parade Update! we are trying to get as many of Ava's supporters to come and walk in the parade to help bring awareness to Childhood Cancer (Sept. is Childhood Cancer Awareness month). We have about 5 kids and their supporters walking in the parade. Come on out! We want to FILL the streets with supporters. We are asking that everyone where their Ava Shirts, Relay for life shirt, or another Cancer shirt. Line up will be in the vicinity of Ohio Street at 3rd and 4th Streets. Parade begins at 10 a.m. The parade route will be as follows: Ohio Street to 2nd Street, left onto Greene Street, right onto Front Street proceeding to the Washington County Fairgrounds. Signs about Fighting Cancer, candy and Gold ribbons are very welcome! Anything to raise awareness! Please contact me with any questions and I really hope to see everyone there!!!!!!Traci Nichols
8/22/2010 - "Ava had an AMAZING time at her big 5th Birthday Party yesterday! We had so many friends and family come out to celebrate with her. She hasn't stopped talking about everyone who was there and the Taylor Swift cake and, of course, her gifts LOL! She has been doing very good lately. She is walking better everyday, even running. She has her spirit back and is excited to start preschool soon. She is the little goofball that I remember. God truely is miraculous-there were times we prayed that we would see this birthday and now we are praying for many many more! Love you all and thank you for making Ava's birthday party MAGICAL! (FYI, Ava's birthday is actually this Thursday, but we had her party yesterday because of David's work schedule)Traci Nichols
8/12/2010 - "Ava has been having quite a few good days. We are still trying to take her to the pool for therapy as much as we can, and she has been talking a lot more about going back to preschool lately. We had a few wonderful moments over the last week-she gagged one time when the spoon went too far in her mouth (she had lost her gag reflex before), she jumped on the trampoline ALL BY HERSELF, and she has started writing with her RIGHT hand again! I just want to cry everytime she does something that she used to be able to do. The look of pure excitement and accomplishment on her face is just so touching. She also has a big birthday coming up in a few weeks! Love to you all and God Bless!)Traci Nichols
11/11/2010 - "We will be flying back to St Jude for Ava's check up on Monday, Nov 15th. Ava still seems to be doing good, we still are seeing small improvements...but to be honest, I am having a very hard time right now. My anxieties and fears are off the charts. I just ask that all of Ava's Prayer Warriors, pray for Stable results next week. Pray for our fears to go away and fill us with Hope and Faith in the Lord. Just let us hear the word "Stable" next week. Thank you all and God Bless.Traci Nichols
01/20/2011 - "We are finally home. Unfortunately, we did not get the good results that we were praying for. David and I now have a few important decisions to make. Although we are unsure at this time what to do, we are praying for the Lord to show us the right path. All of your prayers are appreciated now more than ever. Prayer in numbers.".Traci Nichols
01/20/2011 - "I would like to give everyone a more detailed update at this time. At Ava's MRI on Wed., we were told that the tumor appeared to have grown some. David & I were then faced with the decision of which treatment path to go down. After much consideration, & praying, we have decided to follow our gut & hearts & not give up on her current medication. We will be going back down to St Jude, no later than 4 weeks to do another MRI check-up, to hopefully hear some better news. We had to consider many many factors & many many treatments, & we feel that this is the current overall best decision for our baby. I also want to mention, that physically, Ava is doing great. She is "showing" no signs of any changes and is in better spirits than she has been in a long time. Thank you all for your prayers & kind words of support. And thank you for all of the Ava pictures that we are seeing here on FB! Love & God Bless you all.".Traci Nichols
05/23/2011 - "We are still @ Childrens. It is looking like Ava had a stroke. We still have more tests to run & a plan to figure out. She is having trouble doing many things & is just very aggrevated. Needing lots of prayers. Thank you & God bless".Traci Nichols
05/13/2011 - "Ava (and us) will be leading the Survivor's lap at tonights Opening Ceremonies for the Belpre Relay for Life!!! Hope to see many people there supporting this amazing cause. Together we can find the Cure! One year ago, we were still at St Jude and my Dad walked the Survivor lap and we all said that Ava would be walking it this year. Now, by God's Grace, she is going to be leading it!".Traci Nichols
05/09/2011 - "I just now got to get on my computer, so here is the official update on our trip to St Jude last week: The Drs found a spot that they think may be another start of a tumor in a different location of Ava's brain. If it is what they are concerned about, it probably has been spread via her spinal fluid. This is not good. We decided to change her to a different type of chemo, that although isn't proven to help her DIPG tumor (as there is no medicine that is), this new medicine has been known to be able to penetrate the spinal fluid. She has taken 4 doses of the new medicine and seems to be doing well on it. It is a whole new routine for all of us. She will be 3 weeks on, 1 week off and getting labs drawn every week. We thank you all tremendously for all of your prayers. They said that "Her physically does not match her scans at all", so we can only believe that by the grace of God she is still making physical progress. She is a fighter, as are we, and we will continue to push forward and live as normal of a life as possible. Cancer will not control us. Love and God bless you all!!! ".Traci Nichols
06/08/2011 - ""Today has been a more laid-back day. Ava seems a bit uncomfortable at times, so we continue to try and change her position to keep her more comfortable. Having to keep her right arm up makes it a little extra of a challenge though. She seems to be eating a LITTLE bit more, but every little bit counts. We appreciate all of the dinners that are being made for us, it truly helps not having to worry about that. Thank you so much to everyone. David almost has the pool ready and I am more than ready to try and get Ava out in it. I'm sure the weightless feeling will be soothing for her. God Bless"".Traci Nichols
06/06/2011 - "Thank u to all of u for the amazing support. Ava was very excited to get home, seeing her dogs is amazing for her spirit. She is still on the feeding tube and still not talking or holding her head up. We are just trying to act normal around. We want her to feel as normal as possible bc we sure as heck arent just going to sit around & wait for something to happen. Thank u for the prayers, a miracle can still happen."Traci Nichols
05/30/2011 - "We had Ava laughing quite a bit today, but this evening has been tough. She had another EEG this morning & luckily it showed no more seizure activity. However, she is so sore all over from all of the flexing of her muscles during the previous seizures & all of thw Posturing that she is doing now that she is in quite a bit of pain. She cant tell us what is wrong & we feel like we spend all day/night trying 2 ease it."Traci Nichols
06/13/2011 - ""I'm watching a movie with Ava to try and keep her awake. Hoping that she will sleep well tonight.(which hasn't been going so well lately) She still has the feeding tube, but she is doing better eating/swallowing. Last night she was trying to talk to me. I could almost see the words coming out of her eyes and when she would move her mouth, I would just smile and encourage her to say anything. ANYTHING at ALL! Of course, no words came out, but she was able to copy a few sounds, and we all were so happy with that. She was also trying very hard to hold her head up. I just praised and praised her and told her that Jesus and God are helping her too, she just has to keep trying.All the time I would praise her, her little eyes would twinkle and she would just have this huge smile on her face. Every little step forward, no matter how little, is a blessing.
I am still trying to cope with my helpless feeling. As a mother, I am supposed to fix everything. Right now I feel like I can't fix anything. She can't tell me what is wrong, even though I have a slew of guesses. I always go down the list of things to help her with. Is she uncomfortable? Do I need to change her position? Is she tired? Is she hungry or wet? Is she in pain?and then there is always the list of things that I already know the answers to...Is she scared? frustrated? confused? angry?
I spend all of my days trying to make her comfortable and smile. I try and do therapy with her without upsetting her too much. Meanwhile, I have a million thoughts going through my head of all of the unanswered questions that I will knowingly never get the answers to. I have had to have dreaded talks with doctors, and swallow that lump that appears in my throat throughout the day. I know that I have to be strong for her, because if she sees me even tear up, she begins to cry (just like she always has). I stare at her while she is sleeping just to watch her chest move up and down, and heaven forbid she hold her breath and then my heart starts raising and my stomach feels like I can vomit for the few seconds until she exhales. I guess this is the first real time that I have ever typed, even this vaguely, what I am feeling. Not quite sure what has come across me, but here it flows. I cherish EVERY SINGLE SECOND that I can. I catch myself laying beside her and purposely trying to smell her and "make a memory". I have been told numerous times that God has chosesn us as advocates. I believe it, because I have seen some of what Ava has done to this community, heck this world. But we didn't choose this. We are not trying to be an inspiration for people, although people are so sweet and say we are. We are just trying to be the best parents that we can be and do everything in our blood to save our angel....mind, body and soul.
Well, I guess this has turned into more than just a little update. I thank everyone out there for the love and support. We are blessed to live among so many people who truly love us all. Sweet dreams and God Bless"Traci Nichols
09/16/2011 - "was contacted by St Jude today and they asked that I stop giving Ava her chemo for the rest of this cycle. Her counts were just too low this week. At least she only had 5 more days left in the cycle. We are still going to do her weekly lab draws and hopefully her counts will come back up so she can start her next cycle on time. I wish there was something that I could do to help get her numbers up and keep them up. If they continue dropping and staying low, they said they may have to lower her dosage, and we don't want that. So, as for now, just being careful who she is around and hand sanitizer is one of our best friends."Traci Nichols
09/12/2011 - "Toughness is in the soul and spirit, not in muscles. ~Alex Karras
Good afternoon everyone! I actually had a few minutes where I have time to sit down and type, so I wanted to post an update on Ava. First of all, I want to say a huge thank you, once again, to all of her supporters. People throughout the Mid-Ohio Valley community, and all across the world, pray for Ava every single day. There is no doubt in my mind that the Lord is hearing each prayer and, slowly, answering them. We are living our lives in our "new normal" and embracing each morning giggle with a smile spread across our faces. Ava is still sleeping in her new bed in our room. Hope is sleeping on her bed each night and Ava wakes us up every single morning with the sound of beautiful giggles.
One of the most important things that has been happening is that Ava is really starting to be vocal again. This all started last Thursday and has only progressed. She still isn't saying any words, but there is a LOT of gibberish, and it is absolute music to our ears. For the past few months, I was getting the impression that she was scared to try and talk, to try and make any sound. Now that she is sitting there jabbering, and we are praising each sound, I believe she has gotten over this fear and we may FINALLY be making progress in the speech area. There has been a few times that we swear she has said Dad and Mom in these past few days. Let me tell you, when you haven't heard your child's voice for over 4 months, it is unable to describe the emotion to just hear their VOICE again, to hear what they used to sound like, even if it isn't making any sense. Her Physical Therapist is very happy with how well she is doing. She is holding her head up better and better each day and really using her trunk muscles to help herself sit up. Of course she still needs assistance in both of these areas, but every day she is trying harder and getting stronger.
I am overwhelmed with amazement for my daughter. She is the strongest person that I know, without even knowing she is doing it. There are times that I think about if an adult had to go through everything that she has been through. Losing her ability to walk, twice. Losing the ability to use your arms and hands, twice. Losing the ability to sit up, hold your head up. Losing the ability to talk. Be honest, who wouldn't give up? Who wouldn't be pissed off at their situation every single day and not have a single tear left to shed for themselves? I can't say that I would blame them at all. And here is my 6 year old daughter, who although she can't actually say it, is obviously showing us that she isn't giving up. It is that natural wonderful instict that God has put into our innocent children to keep going, to be fearless and not even consider rolling over and just "taking it". You cannot teach that. I wouldn't know where to begin to. Thank you God for filling my daughter with this "instinct". Not only is she still fighting every day to be able to do the simplest tasks that she used to be able to do, but she is fighting for her life, and she is never going to give up.
We have been very active with Ava. We have been doing a lot of camping with friends, and this is amazing therapy for her. It is so good when she is surrounded by her friends and they don't leave her out. I have had this conversation with my friends, and Ava has been a lesson to her friends that they didn't even know they were being taught. Whether they are old enough to remember Ava before she got sick, or young enough that this is the only way they know her, they embrace her with open arms. They never exclude her, even when playing. If they are running around catching lightning bugs, they stop and show her when they catch one. If they are playing restaurant, they figure out what kinds of foods Ava can eat and that is what she "orders" and is "served". It brings tears to my eyes that none of them look at her funny. They genuinely WANT to include her at all times without being asked. Aww, and the smiles that they bring out of Ava are priceless. I know she has a special sense of feeling "normal" when playing with them. So, although these children are too young to read this, I want to thank them. I want to thank their parents, because they are doing an amazing job as well:)
Ava is still taking her chemo every 21 days and then has her 7 day break. She is still taking her seizure medicine numerous times a day, along with other medications. She is currently on a round of antiviral medication to help her since she was, unknowly, possibly exposed to the chicken pox. She is taking every medication like true champ. We still have a home nurse come once a week and do Ava's labs through her port. Her numbers have been down, but not too bad. We just have to be extra careful, like always. The chemo made her lose some of her hair, but some is already growing back. Overall, she is holding her own.
Lastly, I want to mention the BrAva walk on September 24th. This is a 5K walk/run that is being put on by the Non-profit organization BrAva that was formed by friends of Ava and Bridget Crock, another little girl that has had to deal with cancer. I am on the committee for this organization, and we are looking for people to participate, volunteer and donate for this cause. Most of the proceeds will be going to CURE, which is pediatric oncology research. We have a website: http://www.bravafight.com and a FB page http://www.facebook.com/#!/profile.php?id=100002093191239
Please come and check these out. This is the first of many annual walks!
Thank you again to everyone. I am going to end with this:
The human spirit is stronger than anything that can happen to it. ~C.C. Scott
As your faith is strengthened you will find that there is no longer the need to have a sense of control, that things will flow as they will, and that you will flow with them, to your great delight and benefit. ~Emmanuel."Traci Nichols
12/15/2011 - "From Traci Nichols c/o AVA NICHOLS 12/15/11
Good morning everyone,
I know that I have been scarce on here, and I apologize. Ava was sick for about 4 weeks with a horrible nasty cold. I actually believe that it started with allergies, but all of the crud just got stuck in her throat since she is unable to clear her throat or blow her nose. The poor girl was coughing from the top of her head to her little toes and there was nothing we could do. We were giving breathing treatments, using vicks, have a dehumidifyer by her bed, a suction machine, allergy medicines...ect ect. And then to top it off, when she first got sick, David came down with strep throat the same week. He was about as sick as I have ever seen him. So, I was on MAJOR nurse and sanitizing duty! HOWEVER, it seemed to work because Ava did not ever get the strep throat (knock on wood). While Ava had this crud, she also started school. At first I thought that maybe school had been a mistake, because she seemed just miserable. But things are going better. I'll tell you more about that later. I am just so glad that Ava is feeling better now. We still have some coughing every now and again, but over all she is doing good. Her coughing spells were so intense that as soon as she had one, it would completely wear her out. She would be utterly exhausted from it, so therefore she was sleeping all the time. Add that on top of the fact that she was having a very hard time swallowing with everything in her throat, and so she lost weight. What scares me is that the extreme fatigue and troubles swallowing could also be symptoms from the tumor. Seeing her feel miserable and not have the energy to hold her head up (which she had beed doing quite well) had this mommy very worried and in many tears. I'm just so glad that she is feeling better, staying awake more, and acting more like herself again this days.
We have started therapy at the school now and still at home. Since she was so sick, she lost so much strength in her neck and trunk muscles because we couldn't even make her try and do therapy. The good news is that the therapists don't see any regression in the rest of her body, just holding her head up, so they don't think it is from the tumor. Hopefully with more work she can get back to where she was....holding her head high.
As many of you know, our friend Espn from St Jude passed away this last month. Espn was a wonderful friend to Ava. He would have been 4 this month. I believe he was diagnosed 2 days before Ava, and they went through radiation together and were on the same trial chemo. We always tried to go down to St Jude the same time as him and he would always want to get candy from the airport to share with Ava when he saw her. Espn was an amazing, heroic little boy and we love him very much. I believe his family felt the same way, that these two kids were in this fight together. Everything seemed to happen on the same timeline in the beginning, so when they would have different symptoms later on, it almost felt like it was going to happen to both of them. This led to both sets of parents worrying about both kids. Unfortunately, I couldn't help but have the same mind set when Espn passed away. This was right when Ava was sick and feeling miserable, and the worst of thoughts ran through my mind. I literally cannot put into writing some things that I thought of, because I cannot even put them into words. I know that it is only natural, but I feel a sense of guilt and ashamed when I think of those things. As if I'm giving up hope or faith...and that we are NOT. I feel as if I betray someone (not sure who) when I think of those things. Ava? David? Her Supporters? God? I don't know, but I still feel it. I guess it is just natural...
So now that Ava is feeling better and, still tired some, but happier, let me tell you about school! In these past few weeks she really seems to be enjoying it! We go 4 days a week and the kids LOVE HER! This shouldn't be a surprise to me because kids are so accepting, but there was some major anxiety about what might be said. There have been a few incidents when a child has innocently made a comment, and I have told David, I'm pretty doggone impressed with how well I have handled it:) The biggest challenge now is how to make all of the many kids who want to hold Ava's hands the whole time happy. Ava just loves the attention. I'm to the point now that I can just leave her in a group of kids and they are holding her hands and talking and making her laugh and I just smile. This is what she needs. Ava has always been such a social butterfly-----those children are the best therapy I could get her. The best feeling of normalcy I could give her. So even though I feel like I am in school again (starting over in Kindergarten:) every second is worth it to see Ava's eyes light up when her friends come running over to her and want to help push her around in her new wheelchair. Or when the kids want to just sit beside her and "read" her a book. It warms my heart.
I guess this has been plenty long enough (probably too long for most of you), so I will wrap it up with the fact that Ava seems excited for Christmas. She enjoyed putting our tree up with me (actually just holding the ornaments for me, but whatever) and we talk about Christmas all of the time. Ok, I talk about Christmas, she just smiles. (we are still working on trying to get her to say more words). And as I layed in my bed the other night, it popped into my head that it is almost Christmas time. So I began to pray, as I have everyday since, that we can have a Christmas miracle for Ava. I know it is asking alot, but we are not giving up hope, and now is certainly the time to have it. Hey, if the Brady Bunch could have a Christmas miracle, why not us?
I hope everyone has a Very Merry CHRISTmas and a safe Holiday season! God BLESS!
ps--people are always wanting to know when I play a show out. We are playing this Friday the 16th at the Brewery in Marietta! This is MOMMY'S therapy! Show starts at 9pm:)."Traci Nichols
1/16/2011 - "Good evening everyone,
There hasn't been a lot to update on Ava recently, but I at least wanted to check-in with everyone. Ava is doing about the same as the last update. She had a wonderful Christmas, where Santa was VERY good to her and Happy New Year that she got to ring in with her best friends! She even stayed up past Midnight! We enjoyed our break off of school and are getting back into the swing of things again. We are still working on getting her muscles strengthened so she will be able to hold her head up on her own again. She still seems to be gripping well with her left hand and some in her right. Unfortunately we are not seeing much movement with her legs though. We are having to really watch what textures of food she is eating, although she has started drinking well from a straw again in this past week. Right now my days are focused on therapy (with therapists and then just me doing some at home throughout the day), school, trying to get as much food and liquid down her as possible, medicines and making sure she gets enough sleep. (Exhaustion can make a seizure more likely to happen, so I don't like "keeping her awake" when she is tired) The girl just keeps growing taller and taller! This is a wonderful, if I could just get some weight on her. Every week we do labs, and I always get nervous about the results, and now I am equally as nervous for her weekly weigh-ins. I know if we can't keep her weight steady or put weight on her, then the feeding tube is a huge possibility again. I want to do everything in my power to make sure she doesn't have to go through that again, even if that means me sitting and feeding her for however long a "meal" takes. It just breaks my heart how skinny she is, but it is good to hear that she is well hydrated and her labs and electrolytes look good. I know also that she is losing muscle, so that is some of the weight loss as well. Lets just put it this way, she is getting to eat A LOT of milkshakes of various flavors (little does she know they are made with Ensure).
David and I decided to take her out to eat at Outback tonight. We went to the mall and walked around for awhile and then went to eat. We had a LOVELY night. Ava used to get incredibly excited to eat at a restaurant, and since her stroke, we hadn't felt comfortable enough to take her to one. I'm not sure why we decided it was time, but it was the right decision. We had her in her wheelchair, right up to the table. We were coloring and she got to eat mashed potatoes off the menu. I even made sure to order some cheesecake to bring home for her tomorrow.
Some of you may have seen the picture that I posted on here of the new addition to our family that is coming. Although I wasn't exactly keen on the idea, David was begging me to get another Min Pin puppy. I told him he was out of his mind since Hope (our Yorkie) is still a puppy and we already have Annie (our Chocolate Lab). Well, he knows how this game works and he quickly got Ava on his side. Ava is such an animal lover, especially her dogs. When I am unable to squeeze one more smile out of that girl, all I have to do is bring a dog up to her and she lights up. Any time David would mention this new dog, Ava would get the most excited look on her face....now come on....how do you say no to that!? I mean, my heart is not made of stone and David was well aware of this. He may not admit it, but I am well aware of his plan....and well aware of how well it worked haha. So this Friday, we are calling to see if our new 5 week old puppy is ready to come to her new home, where she will be well loved, and is bound to fall in love with Ava. I will make sure to attach the picture of her again on here.
Now as for Mommy. Let's see. I have certainly had my days. Different kinds of days. Over-all the Holiday season was happy for us. I had my moments, like when we were at my Parents house Christmas Eve, or at David's grandma's Christmas day. I found myself looking at all of Ava's cousins, who are absolutely amazing with her, but I would realize I was sad. Sad because Ava should have been up playing, running around and screaming with them. Telling all of her Aunts and Uncles about the new toys Santa had brought her. Telling me that she didn't want to eat because she was too busy playing. I long for the days when I had to tell my child to settle down. That there was no running in the house. That we need to not scream or sing to loudly. That she needed to move her dance party or concert to the side of the room so people could get around her. That she needed to let people open their own presents because she wanted to "help" everyone rip the wrapping paper off. I wish I would have had to tell my child that she had gotten up too early on Christmas morning and that Mommy and Daddy needed a little bit more sleep. Trust me, all of these things are things that I NEVER thought that I would MISS doing, but I desperately do. Sometimes it seems that everyone else just doesn't realize how darn lucky they are. WHAT I would do to have the normal problems of parenting again. And let me tell you, I appreciate those parents that have made a point to tell me that through us they have learned to cherish those moments and their children more. Because that is what I want to do. To shake people and tell them sometimes. I know it is harsh, and maybe I am COMPLETELY wrong in thinking this way, but I just want to tell people sometimes..."you think you have problems? Let me tell you about problems. We have problems, and yet I am still well aware that there are many people in this world who are worse off with problems than us." I guess this paragraph comes down to this, I appreciate people who count their blessings. Everyone has those moments of self-pity, this is only human nature. But it is people that pick themselves back up afterwards and try their best to look at the blessings in their life that I admire. I know many people like this. Friends, Family and strangers, and my hat goes off to you because this is what I strive to do myself.
Now that I got that off my chest, I apologize for the preaching. As for now, we are in the middle of another Chemo cycle. We only have a few more months on this chemo and then I'm not quite sure what, we are going to cross that bridge when we get there. (a person is only allowed to be on this chemo for 12 months and Ava is on month 9). Tomorrow we have therapy in the morning and music class in the afternoon. So I am going to wind down and try to get to bed at a decent time, cross my fingers that David's snoring doesn't keep me up again tonight, and tackle each new moment as it comes. Thank you once again to each and every one of you supporting us throughout this. Please feel free to share this post, so anyone wanting to know about Ava can. God bless and good night
PS: People are always asking when Jason and I are playing, so I wanted to mention that we are playing the Marietta Brewing Company again this Saturday night 1-14-12. We would love to see everyone there
Well I caved....David & Ava won.. In a few short weeks this tiny puppy will be a new addition to our family. And she will be named Faith. I just couldn't say no to Ava's face."Traci Nichols
01/20/2012 - "From Traci Nichols c/o AVA NICHOLS 1/20/12
Good morning everyone,
I'm sorry I haven't gotten to write an update on Ava since asking for extra prayers. To be honest, I have to be in the mood to write these notes. I try and push down all of my feelings in my everyday life to live as normal as I can for Ava. These updates make me take that wall down and I just have to feel ready for that. I have been saying for the past 2 nights that I was going to write and update, and I just wasn't ready. Then this morning I had her note 1/2 written and my computer rebooted and didn't save it! ugh. So here we go, draft #2.
I guess it mainly began last weekend. David was working nights, so Ava and I were here by ourselves. On Sunday night Ava had a couple episodes where she was gasping for breathe. It would only last a few seconds each, but it was as if she was choking or her lungs just weren't working properly. Her eyes would go wide with fear and her limbs would tense up, similar to a seizure. All I could do is get right in front of her face, hold her cheeks and hands and tell her Mommy is here and to breathe. Combine this with the additional symptoms that we have seen arise and I was terrified. We have noticed that at times, especially when she is tired, her pupils are different sizes. This size difference is due to pressure from the tumor, and we know that. They are still both responding well to light though, so that is good. I had noticed over the weekend that she was having a lot of difficulty swallowing, another symptom of the tumor. This had me worried for many reasons. I was having trouble getting her medicines down her. She was having trouble eating, and we are desperately trying to put weight on her. I thought for sure the feeding tube was going to be essential. We had noticed that she had been very tired, another possible symptom of the tumor. She just seemed like she wanted to go to sleep and was exhausted all of the time. I know sheer boredom is probably to blame for some of this too. We are stuck in this house because it is so cold out and Mommy is only so entertaining after awhile to a 6 year old. As much as I try to entertain her, reading her books, playing barbies, dancing and singing to her, ect....I think she just gets tired of me after awhile! I had also noticed that she was having trouble sucking from a straw, yet another symptom. We had been having a very difficult time getting any reactions out of her. No smiles, no laughter, not even an eye widening or brow lift. I started to really feel like she was suffering and this tore my heart out. So put these all together, and I was beside myself with fear. Because of where her tumor is, it controls all of the things like eye movement, swallowing and breathing. I know that many DIPG children pass away in their sleep, they just stop breathing. So by Monday night, when I posted the prayer request, I had seen her do the gasping thing a few more times. David was working his last night and I didn't know whether I should call him to come home. So I did what I knew as a mother to do. I held my baby. I rocked her in the chair for almost 5 hours. I cried with her in my arms. I talked with her about Jesus and God yet again and how wonderful Heaven is. I talked about the new baby Braxton that I know she can't wait to see and hold. And when she fell asleep, I just rocked her more. I could feel that she was breathing as I held her against me and this calmed me. I asked for the prayer requests and then I brought her to our bed and she slept with me that night, up against me again so I could feel her chest rise and fall.
No parent should have to feel this fear. The fear that at any second your baby may be gone. The constant tightening in my chest if I had to run to the bathroom and running back to make sure she is breathing. The many times I get up every night just to see if she is breathing. The fact that I am worried to ever go to sleep. Ava has a tendency to hold her breathe while she is sleeping, and so I will just kneel down and stare at the sleeping girl until I see her chest rise again. One of my biggest fears is that something will happen when I am not there. I am the mother. I should ALWAYS be there for her. Unfortunately I can't hold her 24 hours a day, and so when I am not, I worry that something would happen and that I will never forgive myself. It is a horrible fear and weight hanging over my head every second of every day.
Well, thank you once again to the POWER OF PRAYER! When we woke up Tuesday morning, she LAUGHED! She was wide eyed, more than she had been in days, when David got home and we got her to laugh! Oh the sweet sound. That morning I fed her yogurt and she swallowed it great. She took her medicines fine. Throughout the day we got more and more little responses from her. She took only an hour and a half nap that day. There was no more gasping for air. I had already canceled her Physical Therapy appointment in the morning but she was doing so well I went ahead and took her to Music class Tuesday afternoon and she was laughing again. She was drinking from a straw again. It was such a turnaround. And it was all because of you guys' prayers! I believe that to my core. She has continued to be stable since then and 2 nights ago I let her sleep in her bed again (in our room). When we did her labs on Wednesday, she had gained 6 ounces! Her labs were good. It was all so wonderful to hear. We finished out the school week and now we are sitting in my bed this morning watching Tangled. (I love how when I put a Disney movie on, her eyes light up and her brows go sky-high when she hears the starting music and sees the image of Cinderella's castle)
Thank you everyone. Together, in prayer, I honestly believed you saved her this week. I was preparing myself for the worst. And although, we are not naive at what is happening, I feel these past few days she is doing better and better. Slowly, but she is not where she was last weekend. And that is really all I can ask for right now. The past two nights we have had some of her friends come out, and I think this is going to be a more frequent event. The kids entertain her WAY better than I do and she enjoys it. It gives me a break and they always get her laughing. God love them.
So there is the most recent update and I thank you guys a million times and I thank God for listening. Now I am going to hurry up and send this before I lose it again! Love and God bless and have a good weekend."Traci Nichols
01/29/2012 - "I don't have it in me to write an actual update tonight, but need to ask for continued prayers. We haven't been able to get Ava fully awake since Friday and we are terrified. Needing God to hear all of our prayers. Thank yo."Traci Nichols
02/02/2012 - "In the last week I have seen a few amazing things happen. I have seen
a little girl fight harder than I have seen her fight. I have seen a
community, full of friends and family, along with people around the
world rally together in prayer, and I have seen God's hands at work.
Last week David and I decided on our own that we needed to get Ava
more nutrition. She was down to 33 lbs and, although I felt like I
had failed her, I knew she wasn't getting enough nutrients. I felt
like I was on a vicious cycle where I was trying to get food down her
every second she was awake. Because she has so many problems
swallowing, she was only eating pureed foods. These foods do not have
a lot of calories and so I was trying to get as much as I could in
her. She seemed too weak to even close her mouth to swallow and I was
having to physically hold it shut to help her. The process of eating
itself tired her out and so she wanted to go back to sleep. When she
would wake up, the cycle would start again. I had been trying to be
so positive that we could do this and not have to intervene, but
suddenly last week, out of nowhere, I changed my mind like that.
Every stitch of my body suddenly told me that we needed to help her
eat. We considered a G tube in her stomach, but David and I agonized
over this because it would mean sedation. The sedation is the reason
we are not performing MRI's on Ava. I prayed and prayed for help with
this decision and my help came last Wednesday when Ava's wonderful
doctors at St Jude told me they didn't want us to do it. I felt
relieved that this decision was taken off of our shoulders. We had
two choices, either do nothing or put the feeding tube down her nose.
This was an easy choice to us. We know that we can't do anything more
against the tumor, but I absolutely will not starve my child. So
Thursday we decided we were getting the feeding tube put back in and I
had Ava's nurse come out that night and put it in. Why did I demand
it be done asap? I don't know...at least I didn't at the time.
Although I cried when the nurse got here to do it, and I knew that it
is what needed to be done, I struggled with a horrible sense of
failure and guilt. However, once the tube was in, I was once again a
bit relieved because I knew that I could give her body the food that
she needed. This was late Thursday night, right about when Ava would
have been going to bed. If Ava had had her way, she probably would
have slept through the process because she was so tired.
Friday morning I woke up to give Ava her medicines and she seemed fine
and awake. She was awake from about 8am to 10am when she fell back
asleep. I had to go to town and get some groceries so I left her here
sleeping with David. She slept all day. At 5pm I finally woke her
up, or tried to wake her up. David and I did everything we could to
keep her awake until 7pm. Toys, bath, dancing, anything to keep her
awake, but she seemed like she couldn't even hold her eyes open very
long. Not knowing what was going on, we hoped that she was just tired
and I rocked her and put her to bed. Then Saturday she slept all day
again. We couldn't even get her to open her eyes at all. This
continued until about Monday or Tuesday when she finally opened her
eyes. It was only just a sliver, but they were open. This was a
relief. We didn't know if we would ever see her open her eyes again.
To this day, we still don't know what happened. It could be so many
things. It could be as crucial as the tumor or a seizure. It could
be as simple as she was so weak from not getting nutrients and now
that she is, her body is trying to build up the energy she needs. It
could be because she is fighting the horrible Mid-Ohio Valley crud
and, because she is weak, this is how her body is responding. We just
don't know. We have dealt with the feeling of not having answers for
almost two years now...it doesn't make it easier. Sunday was the
worst. That was when David and I broke down. We could no longer deny
that something was going on. Ava's breathing was short and quick. We
got her on antibiotics, lasix, breathing treatments, ect. David and I
felt like she was suffering, and although we couldn't say it outloud,
we felt like something could happen to her at any moment. We decided
to ask a local Minister that we adore, to come and pray with us over
Ava. Meanwhile, I had made my last post on Facebook and it soared.
Within a day we had so many more people praying for Ava across the
world. I know Facebook may be a lot of drama and crap, but it is also
a blessing in this way. David and I have accepted that this is out of
our hands. We gave Ava to God Sunday and asked him to heal her in His
way. That we asked for her healing on Earth but that we prayed for
peace. It looks like God has listened.
I honestly believe that it was God telling me last week to put that
feeding tube in Ava. I had fought against this happening for so long,
that it was odd that I suddently completely switched and couldn't get
it in fast enough. I now know why. If it wasn't for this feeding
tube, Ava wouldn't have gotten ANY nutrition in this past week while
we haven't been able to wake her. Instead, she has put on at least a
pound or two. Thank you God for letting me know that this needed to
The past few days have been a little better. We are simply praying
that each day be better than the day before. Ava has opened her eyes
wider these last few days. She is easier to wake up. Don't get me
wrong, she is still sleeping most of the day, but she will open her
eyes, even if only for a few seconds, when I kiss her forehead, or if
she hears another familiar voice. We have seen her eyes tracking us
when they are open, so this is good. Sometimes she just looks dazed
with them open, but others I know she is seeing. Tonight I read her a
story and I watched her eyes follow me as I sat down and I saw her
looking at pictures that I pointed at in the book. We haven't really
gotten any reactions from her yet.
I wish we could know what is going on. All weekend, everything
pointed to the fact that she was just sleeping. Her vitals were good,
her blood pressure was where it would be if she was sleeping, she was
yawning constantly. She had no other kind of symptoms of seizure
activity. Her body is completely relaxed and not stiff. My motherly
gut tells me to hold her and rock her. This is what I have been
doing. Although I am tired of being in this house at times, I am
terrified to leave her side. David made me go get a Rx just to get me
out of the house for a minuted. Bless him.
I can't thank you all enough for your prayers. This girl has once
again proven me wrong. I thought she was going Home last weekend, but
the Lord is slowly showing us healing. Please keep praying for
healing and energy for her. I know the kids at school are worried and
can't wait to get her back there. She did well when we took her
outside yesterday, it seemed to stimulate her, so I am considering
trying to get her out of the house this weekend to see if it helps
her. There is no book on how to handle this. There is no one telling
us what we need to do. I wish there was. I guess if I let Him, there
actually is. God bless you all and thank you from the bottom of our
hearts. I know everyone has been worried and wanting an update, so
feel free to spread this around.
ps- Ava lost her first tooth Saturday night! We also got our new
Puppy last Saturday. I am still getting used to seeing Ava without a
We will always have "Faith" :)."Traci Nichols
02/01/2012 - "From Traci's Mom ( Nannette Fogle Sampson ) :" A general Ava update
from her grandmother. Ava has been doing slightly better in the last
24-36 hours. She had been sleeping constantly, with no particular
reason why. The cause could be many things. Last night and today she
woke up a few times on her own for a short time for her mommy and
daddy. Her eyes seem to respond to them. She is still sleeping most of
the time. We ask for continued prayers and healing to offset whatever
is causing this problem, and complete healing for her body. Please
also pray for strength and comfort for the entire family. God Bless.""Traci Nichols
03/13/2012 - Sweet Ava passed away today. There will be a candle light vigil on 3/14/2012 at 8PM in Dodge Park. Please bring your own candle.
Aug 26th 2005 - March 13th 2012
"She impacted so many lives and was an angel among us. Now we will celebrate her life and continue our never ending battle to fight this awful disease"
03/15/2012 - From Marietta Times
"Ava Cole Nichols, 6, of Waterford, died Tuesday (March 13, 2012) at her home with family and friends by her side. She was born Aug. 26, 2005, in Marietta, daughter of David and Traci Sampson Nichols.
She attended Waterford Elementary. She loved to sing and dance and play with her dogs, Annie, Faith and Hope.
She is survived by her parents, David and Traci Nichols of Waterford; grandparents, Mark and Nannette Sampson of Beverly, Keith and Sally Nichols of Waterford; great-grandparents, Lovell and Goldie Sampson of Beverly; great-grandmother, Jean Zimmerman of Caldwell and great-grandmother, Donna Fogle of McConnelsville; several aunts, uncles and cousins. She was preceded in death by great-grandparents, Muarl and Willadean Nichols and great-grandfather, RD Fogle; her aunt, Kate Weinstock; and "Uncle" Steve Lauer.
A private family service will be held at 11 a.m., Saturday, at the Beverly United Methodist Church with Pastor Jeff Corbett and Evang. Zack Waite officiating. The visitation will be from 3 to 9 p.m., Friday, at McCurdy Funeral Home in Beverly. In lieu of flowers the family would like donations made to St. Jude's Children's Research Hospital. Online condolences may be made by visiting www.mccurdyfh.com."