Hello Everyone, It has turned out to be one of “those” nights. The nights where sleep seems so far away and my mind and heart won’t shut down. Chase could not sleep tonight and I know it was because he was anxious about going to school for a full day tomorrow. He has done really well at school. I have met him every day for lunch and we have slowly extended his day. When he is done with lunch I walk him to the playground and ask if he wants to play. Most days he will try but many days the heat gets to him and I take him into the shade or take him back to his class and we read books until the other kids return. When he says “mommy I can’t sleep” I know exactly why. I wish I could take away his anxiety, promise that he will do just fine. I smile at him and tell him that I will rub his feet and assure him if he lays down long enough he will drift to sleep. Behind my encouraging smile my mind races. I worry about him being able to open his bento box, wonder if he will ask for help. I worry because I know that he won’t hear the whistle for when it is time for the kids to go in, I wonder if he will ask a teacher that is on the playground for help if he gets to tired. I have already discussed my concerns with the teacher and she has been AMAZING! But I can’t help but think…maybe I should go hide behind the cafeteria and watch him to make sure he gets back to class okay. I am sure the thought sounds borderline bonkers but it is a definite possibility. I find myself without answers at times. Chase does not understand why so many people ask him about his hearing aids. I try to explain that they are just curious and once they know they will probably stop asking. He asks why his bones hurt and mommy and daddies bones don’t hurt like his. He gets upset he has to wear a hat to cover his head from the sun and nobody else has to. There are so many times I struggle to find answers to his questions. They are questions I never imagined having to talk about with my 6 year old. I keep my calm and smile but behind my smile my heart breaks.
September 1st has quickly come and the beginning of pediatric cancer awareness month brings so many emotions. It took me over a year to say “my son has cancer” without bursting into tears. It has now been 4 years since he was diagnosed and although I can say the words…there are moments where I still feel like I am trying to absorb the reality of Chase having cancer. Many days the only thing that makes me forget about cancer even for a few moments is Chase. His smile, his will and determination…when he makes me laugh…for a moment I forget. You see, Chase is the best therapy and healing that I have found.
I have never questioned God and said, Why me? Because this is not about me. There are moments that I wonder why him….why any child..why anyone…has to endure cancer. It is such an unfair disease. It does not come as a result of a lifestyle choice or any other reason that would even remotely make sense. It is brutal, it is cruel, it is painful, it is indiscriminate and truly…it is not fair. As a mother it feels all wrong when your child is diagnosed. We are the ones that are supposed to fix the owies, mend the wounds our embrace is supposed to be enough to take them away from the difficult moments. All of the sudden all of that is taken away. I wish I could have done all this for Chase, I wish I could have taken his place and fought cancer for him. I wish I could fix the owie and it is very humbling when you learn you cant. Humbling when you turn to God and truly in your heart know that he is the one who can mend the wounds he is the one who has the ability to heal your child. Even when you give it up to God, your heart still aches…that momma ache that never seems to go away.
I try so hard to take every moment and soak it in. I try and do the best for both Emma and Chase. I try and not let cancer define our family. Then the phone call comes, I actually got it just last week. Time to schedule another MRI. My stomach immediately hits the floor. I try and put it in the back of my mind…push it away. But how do you push something away that is such a big moment. When the kids were young I used to pace back and forth waiting for the on call doctor to call back about a slight fever or a funny sounding cough. Now the reality of knowing that one moment after the MRI as you sit and wait for news from the doctor is not going to be weather or not they have croup or if they require more tylonol but it is a call that will determine weather or not your child has another 3 more months cancer free…or if you could possibly lose your child. It is incredibly overwhelming. Those are the nights that I lay in quiet prayer. Asking God for peace, begging for healing.
I wish I could be stronger….like Chase. But sometimes I still feel as heartbroken as I did the day the doctor said, “we found a mass in Chase’s brain”. That day is still my nightmare, it still feels as though it happened just yesterday. I have tried to wish it away…but it became life. So many blessed memories and hard memories all lie in the past 4 years since Chase’s diagnosis. No, cancer does not define us…but it sure has been the center or our lives for the past 4 years. Not by choice, rather by circumstance.
I don’t know why Chase has to fight so hard, I don’t think I will ever know that. There are nights where Chase will wake up crying as he says in his sleep, “no it hurts”. Nights were he will cough and I will instinctively pop up like a jack in the box trying to find his bucket in case he needs to throw up. They say time heals all wounds…perhaps it does…but we need more time. So every night I humbly ask the Lord for just that. Time…time to see him smile, time to see him laugh, time to watch him grow, see him drive a car, get his license, graduate from collage, and fall in love….
I usually try and stay positive…but there are nights like tonight were the reality is… I feel broken. I know it is okay to feel broken, because otherwise how would we witness Gods moves in our lives to mold us and teach us…to pick up the pieces and put us back together.
So tonight I humbly lay myself before Gods feet and ask him to put back the pieces.
I can not thank you all enough for being “there”. On the other side of this message. loving us and praying for us.
Gods love to you all.
The power of LOVE is overwhelming. It is what makes us human. It is what gives us hope. It keeps us going on the tough days, and keeps us smiling through life difficulties.
I love to see my two kidos show each other love. Chase looks up to Emma so much. In my absence he looks for Emma for safety and reassurance. Emma is my beautiful momma bear. She gives up moments to herself to look after her brother. She does it not because she is asked to but because she truly cares for Chase. T his morning Chase was nervous and said “mom how do I get up the stairs to the lunch room if I have my lunch box in my hand?” Before I could answer Emma said, “Don’t worry Chase I will be there and I will hold your hand”. Yesterday as all the moms sat anxiously awaiting the dismissal of the kindergarten class Emma made her way to the front of the crowd and stood at the steps and anxiously said, “momma when will Chase come out?”. She loves him so much I sometimes have to ask her to let Chase “try” to do it before she offers. Otherwise she will pick up his dishes, hold is school bags etc. It is a love I will always be blessed with and I will never forget.
Here is my story of love for my little man Chase. As many of you know he is bound and determined he is going to marry me. A while back my wedding ring got to tight and stopped fitting (lots of time sedentary at the hospital made mommy gain a few pounds too). Marc was kind enough to update my ring and size. When he got my ring he gave it to Chase to hand to me. Chase held the ring behind his back and surprised me with it. I gave him a big hug and told him thank you. Later on in the night I told Marc thank you and I saw Chase’s face fall and tears welled up in his eyes. He said, “I know mom, daddy got you the ring”. Marc and I both saw the hurt and simultaneously said, “no Chase you got mommy the ring”. Marc said, “Did you get mommy the ring because you wanted to marry her?” and Chase replied “yes”. So now he is completely happy with the knowledge that he and I are married. I know there will be a day where he does not want to marry his mommy…but until then…I will soak up every bit of his love.
Love can heal so many wounds.
You all have loved and prayed for my family. You have followed our journey and encouraged us with love.
I pray that God blesses you all ten fold.
Following the Lock summer theme…we are rolling with the change. As we embark on a new journey I humbly come to you all and ask for prayer. You all are a powerful group of prayer warriors and the power of prayer NEVER ceases to amaze me.
Tomorrow the kids start school. Emma will be going into the second grade and her new teacher seems really great. It is hard to believe my little girl will be in second grade (sniffle sniffle). Chase will be starting Kindergarten, the moment is so bitter sweet. I am so pleased he will be able to go back to a new normal, but the selfish mommy part of me does not know what I will do without him. I am trying not to worry and know he will be in Gods loving arms while he is away from me, but I find myself pushing worries like, what if he does not see the stairs and he falls, what if he gets scared, what if his bones hurt? Each time a worrisome thought crosses my mind I stop and give the worry to God. I ask for prayer for Chase as he has become very nervous about tomorrow.
In other news…and prayer requests. I ask for your prayers as we list our home for sale tomorrow. Please pray that someone falls in love with our home ASAP. This is another bitter sweet moment. We have lived here for 9 years and all of our memories as a family have been made in this home. I can not walk through any room in the house without floods of memories touching my heart. There are also the hard memories, I will never be able to look at my bedroom and forget the spot where Chase fell out of the bed and hit his head…when the first portion of our journey began. I remember laying awake in his room as I watched him sleep when he first came home from the hospital. There are also so many sweet moments I will never forget. Emma’s height is charted in the office and I am able to see what a big girl she has become. I remember walking into the laundry room after learning I was pregnant with Chase and looking at Marc and falling apart in tears of joy. I swung Emma around and sang, “you are going to be a big sister.” This home has so many memories but as in life it is time for a change of seasons.
We will be moving to a new home that will cut our Phoenix drive down one hour and 45 minutes round trip and we will be closer to Marc’s work. Phoenix and follow up appointments will always be a part of our lives and we want as little disruption to our families new schedule as possible. I will be able to shoot up and back to Phoenix with Chase in one day, instead of making it a two day trip. That means that I will be able to drop off Emma and be there to pick her up from school every day. This is so important because I want her to trust that I am going to be around this year. PLEASE PLEASE pray that Chase will have a lifetime to make new memories in our new home. He needs that, we all need that. It would not be a home without memories of our children and we are acutely aware that every day is a gift. Please pray for a lifetime of day by day gifts.
You all have become my prayer family. I love you all!
Information overload!….but in a good way. Thank you all for your prayers because our trip to Phoenix on Wednesday went very well. We had two very long appointments but they were full of AMAZING information. First we had our audiology appointment and Chase was such a trooper. He sat through three…yes three rounds of hearing tests. 1st one without his hearing aids, second one with his hearing aids and the third with his hearing aids all cleaned up. The results showed that Chase’s hearing has remained stable since his last test (good news). I told the audiologist about some of the issues I had seen at home and she said it may be due to Chase trying to figure out what words are supposed to sound like…should it sound like he had heard it for months and months while he was loosing his hearing…or should it sound like it does now with his hearing aids. So if I say bread…he will say, did you say head? It will take some time for Chase to figure out how things should sound. She also answered questions I have asked doctors for about 5 years and never found an answer…it was a definite aha moment. The meeting ran over an hour and half so we had to rush to oncology in hopes we were not to late for us to see the oncology team. We saw two docs we have never met because our normal oncologist is out on maternity team. Let me just say that I was BLOWN away. The two docs were diametrically different but an amazing team. Both were very very knowledgeable, one was very analytical and wanted to go into in depth detail of every image of Chase’s brain and spine and the other I would describe as Patch Adams (odd considering the loss of the great actor Robin Williams) he carried an old fashion black doctors bag that was full of toys. He played with Chase but each play activity served a purpose, he was testing Chase’s reflexes, his vision, his visual field, his eye tracking, his balance and endurance and all the while Chase thought he was just playing. It is rare that an oncologist will branch out and check out other items such as vision etc. It was truly amazing!!!!! They also answered questions I have been asking for years. You know the questions you ask over and over again because you know you are noticing “something” but once you ask the question the doc looks at you like you are crazy….they answered those questions. If I could pass on one word of advice, if you feel something is going on with yourself or a loved one and docs look at you like you are crazy…keep asking. Any time you get in front of a new doc ask them and if they don’t have answers ask the next doc, follow your gut because you will always be right. When they gave me the answers that I have been looking for for years the answers clicked in my brain and made so much sense. Of the three docs we saw that day each and every one talked about Chase and school and how the 504 or IEP was working and gave me detailed list of what they wanted them to look at. I will have Chase’s IEP re-evaluated this year, however Chase will be going to Castle Hill (which is private school) where he has gone for years. They have been AMAZING at working with Chase.
As I drove home I reflected on Chase and how it is not a natural act for children his age to have to sit so patiently. Not speak out or play while their parents talk with doctors and yet must comply with each and every task asked of them in order for a full examination to be completed. Chase rode for hours in a car only to pull into a hospital parking lot (no fun) and needed to remain patient for hours upon hours. Although I am sure it must be tough to be six and have so much expected from him, he remains polite and has such a good disposition. I had mentioned once that I felt like I was bribing Chase to be good for an appt if I got him a toy after and someone said, it is a well deserved reward. I did not make any promises this time but Chase was above and beyond amazing so I “rewarded” him with a new stuffed dragon. ( ;
It has been two days since the trip and I can tell that Chase is sill paying for the long day. His legs are hurting and he says the inside of his feet hurt. Today he said he was feeling woozy and laid down to take a nap. I am glad he knows his limits but it is still heartbreaking to have him point out all of his owies.
Thank you all for your prayers, when everyone prays I can feel it and there is such a feeling that God is with us.
Thank you all so much.
On the road again…
The past 20 days have been an adventure and an unplanned adventure at that. When we were in Phoenix for Chase’s scans I knew we would not hear back from our docs for several days. I really did not want to sit at home and think and count the moments until we heard from them…and that is when our spur of the moment trip began. I decided to head to Laughlin to see the kids cousins and my brother and sister in law. It was so nice spending time with them. I have missed their kids so much. Chase and his cousin Robert were inseparable and began “boy time” immediately. Emma, and her cousins, Berie, Charolotte and Madelyn spent time being girls and of course doing a lot of swimming. After that we headed to Las Vegas to visit my best friend (since first grade) Bea and her family. She had a new baby and Emma was eager to hold Marisol and give her the bottle. Bea’s son Sammy played video games with Chase and he was super excited to have someone who shared the love of Lego Batman and Sonic racing. Emma warmed up to Violet who is 2, they made mud pies and reveled in the delicious mud feast. We also took some time and went to see the Balagio Rose Garden and watch the water show at the Balagio. After that we headed back to Laughlin to celebrate Charolotte’s 5th birthday with the Laughlin Locks. I knew that we would have a long drive back to Pinetop…so another last minute decision was made….we decided to do a Northern Arizona roundabout on our way back. We also decided to take their cousins Madelyn and Robert with us, I really wish I had a bigger car because I would have loved to take all the kids but as it was my car looked like a clown car as all of the kids pilled in and out. Our first stop was to Bearizona. That was super cool, the kids got to see bears, bison, wolves and so much more all while riding in the car. After that we settled in Williams for some much needed rest. The next morning we rode the train to the Grand Canyon. I am a bit afraid of heights so I was a little nervous with four kids so close to the Canyon but we had a great time. As we rode the train back from Williams the kids chit chatted about heading to Sedona the next day. I have always wanted to go back to the place Marc and I got married in Sedona. I really wanted to take the kids there. The next morning we had breakfast and headed out to Sedona. This was the only time in the trip that Chase complained about bone pain in his legs. We took the trip slow and made accommodations to keep Chase in as little pain as possible. Sedona was BEAUTIFUL, the place had changed so much since Marc and I were married that I hardly recognized the hotel. It was peaceful and perfect, the kids played in the creek every day and stargazed at night. After 2 days in Sedona we were all loaded up and headed back to Tucson. The house feels alive with four kids and there has yet to be a dull moment.
In the past Marc and I would have planned and belabored to do a long trip like this. We would have weighed the pros and cons, and thought at noisome if the timing was best for Chase. Despite the fact that we only had 3 days of clothes and had not planned anything in advance, it was a wonderful adventure.
Now we are back to reality, Chase has to go back to Phoenix next week for two doctors appointments and then the kids start school on the 18th (mom is sad about this fact).
Friday went well, we checked into imaging at 8 am and as always Chase was chomping at the bit to get his “sleepy medicine”. He was relatively patient until about the last ten minutes when he began to whine, “where is the anesthesiologist”. Once the doctor walked in Chase was quick to giver her the “Chase protocol”, He started by saying, “finally you are here, sooo I take in all of my stuffed animals and my blankie so I won’t get cold, oh I also brought my night cap. My mommy must go in with me so she can sing to me and I like the sleepy mask and I really like the grape flavor…okay that it I am ready to go now.” He grabbed my hand and headed out. When he walked into the gantry he was quick to ask a few last minute question directed to the MRI techs, “What are these contraptions?”. They all giggled and said it is the machine that took the pictures when he was in the tube. He seemed satisfied with the answer and headed out. He hopped onto the table and once he had his mask on he gave me the thumbs up to start singing. I sang my baby to sleep and held his hand. I watched him drift softly off to sleep and gave him a kiss on the head and asked the docs to take care of my baby.
I could tell Emma was nervous as she waited for Chase. She would ask every couple of minutes is Chase was out and I reassured her that he would be out soon. Finally, the nurse came out and called for the Lock Family. Emma sprang from her chair and darted to recovery. Typically Chase is still sleeping when we get back there but to my surprise he was up and chatting with the nurse who was giving him a drink of water. He smiled as we walked in and Emma was the first one at his bedside holding Chase’s hand. I was surprised Chase allowed her to hold his hand with the IV in it. The nurse asked if he was ready to take out his IV and Chase sweetly responded “yes please”. I thought he may panic when they went to take it out but he was perfectly calm and actually watched them take it out without shedding a single tear. We snuggled him in his stroller and headed out.
Chase was happy to get back to the hotel and play some video games with his daddy. Since Emma had been so patient I took her out for a mommy and Emma day. We had a great time and the one on one time was great.
Chase had one request on his list of what he would like to do this summer…go watch his buddy Paul Goldshmidt play a baseball game. We were lucky enough to have a wonderful friend who got us pre-game tickets on the field to watch the team practice. Chase was overjoyed as he scanned the field to find #44. As we sat on the sidelines Prado and Sosso came over and said hi and signed Chase’s ball and jersey. Finally, we saw Paul walking over to Chase. Chase asked if Paul remembered him and Paul was very sweet and said, “ya I remember you from the hospital, remember you rubbed my jersey for good luck”. Chase was so pleased that his buddy remembered him. Prado also took a special interest in Chase (really a super sweet guy). He took of his wrist band and gave it to Chase. He asked where Chase would be sitting and later when Prado caught a ball he came over and handed it to Chase YAY. The sad thing was despite how close we were to the field during game time, Chase could not see the batter or 1st base (where Goldshmidt was). His vision was still not enough to allow him to see the game ) : None the less we had an amazing time!!! We are now die hard Diamondbacks fans…the guys are truly super great guys.
So now we remain still and exercise patience as we wait for results. We usually have results by now but our neuro surgeon is out of the country until August and our oncologist is out on maternity leave. So this leaves an oncologist who is filling in and it is very unlikely he will opine on the results, he will probably just wait for the final radiology report…which can be tricky to decipher. So I am telling myself that maybe I will hear something at the end of the week or beginning of next week…in order to keep from freaking out every time the phone rings (although my heart still skips a beat every time the phone rings). I just want clean scans…
Many blessings to you all.
There is so much to update on…oh where to start. June marked the one year anniversary of when we received the call, the call that broke me for the second time. The news that Chase had relapsed. I was so unprepared to ever here those words again “I am sorry Chase has a tumor”. Chase has been such a champ this past year, he has gone through the toughest year of his life. Yet, he has come out the other end doing wonderfully and is still our sweet adorable and brave boy. Emma has also been through a tough year, 10 months without her brother and so many miles splitting her family. It is so nice for us to all be back together again.
We came up to Pinetop to enjoy the 4th of July as a family. Chase has been asking me when he can see fireworks for over a year. We headed down to the local high school, sprawled out a blanket and enjoyed the cool weather. As we were seated Marc said, “Do you remember the last time we were here, it was July 2010”. It was two months before Chase was diagnosed, the memory made me smile thinking of the two kids in their jammies running around in the football field, then the smile faded and I remembered the fact that due to treatments, travel and germ restrictions this was the last time we saw fireworks as a family. No wonder Chase was so excited, most likely he did not remember seeing them when he was only 2 years old….this would be the first firework show he would remember. I brought the noise canceling headset (a huge help), snuggled Chase and Emma and I could hardly watch the firework show myself because I was to busy watching Chase’s reaction. Soaking up every spectacular look of excitement and wonder that was in Chase’s eyes. It was beautiful and better than any firework show I have ever seen.
The weather in Pinetop was so wonderful we decided to stay longer. It has been so much better for Chase. We are FINALLY able to go outside again without the fear of Chase overheating. We have enjoyed taking walks, going to the park, fishing, and so much more. It is so nice to the see the kids out and about having fun, sharing smiles and making memories. We put up a trampoline because I heard from other families of children who are trying to regain their strength this is a fun way to do it. I am trying to encourage Chase to get on the trampoline once a day. He tires out quickly but in time I hope to see his strength come back.
I was hoping that Chase would be used to his hearing aids by now but the battle sometimes seems uphill. He does so well at home but there is relatively low noise levels. Some friends came over the other day and although I did not hear the change in noise level, I looked over at Chase and he was weeping. I think he gets overwhelmed so quickly that he does not have the words to tell me that he is getting overwhelmed and just breaks down in tears. It is so hard to watch and yet I try to continue to encourage him. I am wondering how things will go when he starts school, please pray it goes well for him and that the new sounds are not to overwhelming or that he finds a way to vocalize his irritation before he comes to tears.
Chase’s MRI is on Friday and I stopped sleeping about a week ago. I pray and look towards God, yet something happens at night when all is quiet and I lay just watching Chase and Emma sleep. I can tell I am not the only one who is anxious, Emma looked upset the other day and I asked her what was wrong and she said, “What if they keep Chase at the hospital and don’t let him go like last time”. My heart broke, she still worries and it is as though she is waiting for the other shoe to drop and our family to be separated again. As much as I want to tell her that wont happen, that is a promise I cant make. So I try and focus on the fact that Chase has been home with us for some time now. I can tell that the words are not enough…. I hope that time will allow her the peace to know we will all be together and that the days of long hospital stays are behind us. Chase seems to be okay with the idea of going back to do his MRI, he is most excited about seeing the Diamondbacks play the next night. He fell in love with Paul Goldshmidt since he visited Chase in the hospital. I hope Chase’s vision allows him to see Paul play on the field.
As time goes by I slowly see Chase recover, his face has filled out, his color has come back and glimpses of new hair are signs that outwardly he is recovering. I wish the inside was as quick to recover. That is the thing about cancer…the long term affects live on long past their body outward appearance to recover. The fight does not end when the tubes are gone and his color is back. The emotional and physical affects are seen daily and we try to work through them one by one. There is nothing I love more than being a part of this family and I fill fight each and every day, each and every minute, each and every second for them.
If only love were enough to take away any physical or emotional scars. But with Gods Love we will all come out the other end.
Please continue to pray for Chase.
My love to you all.
July 6, 2014
I received the call….the call that snaps me back into reality. The radiology department called to schedule Chase’s next MRI. The first thought that came to my head was…has it already been 3 months? I quickly do the math in my head and realize that it is time. After I force myself to take a breath we go ahead and schedule Chase’s MRI. The date is set for July 19th for a total brain and spine scan. I humbly ask you to begin praying. Pray for no cancer, pray for no evidence of tumor (new or old), pray that his organs and body has been spared from the harsh chemo treatment he received. Pray for this or better…God only knows how he can make the results better than our wildest thoughts and beliefs. God Bless.
June 24, 2014
It seems like years since everyone in the family has had a restful nights sleep. The moment we get a routine, things get thrown up in the air again and we adapt to the situation at the time and try to figure out the sleep thing later.
From the day Chase was diagnosed I have slept in bed with him. No matter the size of the hospital bed I was right there snuggling him. When he had to many wires for me to get tangled in, I would sleep at the foot of this hospital bed curled up like a puppy just so I could feel his little toes against me. Emma was only 4 at the time and the staff would allow me to pull up the sofa bed next to Chase’s hospital bed so Emma could sleep with us…it was home. When we got home there was the constant worry about him throwing up in the middle of the night. I would only go into a mild sleep and every cough or gasp made me jump in to gear and grab the bucket. Because I did not want Emma to feel like I was only sleeping with Chase she also went into bed with Chase and I and it became our new “normal”.
We were 2 years out of treatment and I never quiet made it out of Chase’s bed. Once he relapsed we went back into hospital bed sleeping mode. The difference this time around is that Chase was much bigger and now he used his stuffed animals to hide from the realities of being in the hospital. So Chase, the stuffed animals and I always piled into bed together.
After getting back this time and realizing both kids are bigger and that nobody was getting quality sleep I tried to talk to them about feeling safe to sleep in their own rooms. We did some moving around of beds to try and accommodate our effort to have some quality sleep at night. Emma took Chase’s full size bed saying it could be her “big girl” bed and our dog could sleep in bed with her. Chase took Emmas bunk bed and decided he would sleep on the top bunk with all of his animals and mommy could sleep on the bottom. Oh, my own bed… I actually got excited about the idea and the prospect of a quality nights rest. The first night I tucked Emma in to bed and she was feeling very scared, so I told her that I would go in and check on her every 10 minutes until she was able to fall asleep. Little did I know my little gal would stay up till nearly 1 am. Chase was snug in bed on the fop bunk and I felt like we had achieved “sleeping success”, I was exhausted…it was now nearly 2 am and I finally plunked myself on the bottom bunk. The crazy thing was is that I could not sleep without feeling him next to me. I lay in the twin size bed having memories of all the times we spent sleeping together on the small twin size hospital bed. All of the sudden the twin size bed seemed way to large and I could not find enough comfort to drift off to sleep.
The next morning the novelty of of sleeping on the top bunk wore off for Chase and he said, “momma I just cant sleep without you, I get scared.” Emma also has so much fear at night. I ask her what she is afraid of and there is so much going on in her little 7 year old mind. Chase will lay in bed and begin to cry thinking about moments he has of moments at the hospital. He will say he is scared they will happen again and I constantly reassure him that he is home and those bad things are not going to happen here.
Needless to say the following few nights were rough and full of fear and tears. If our lives were different I would be able to follow through and keep plugging away at getting the kids to sleep in their own beds alone…but I am always reminded that the days we have together are not a guarantee. I thank God every night for another day together as a family. I know I would never regret spending another night next to them…but I would regret forcing them to be on their own knowing the fear they carry.
So the past few nights I decided to get innovative. I blew up the full size mattress and placed it next to the bottom bunk. Chase piles his animals in the bottom bunk and sleeps on the bottom bunk mattress with his arms stretched out to reach me in the blow up mattress…and my little Emma…well she sleeps on the blow up mattress next to me. Sleeping on a blow up mattress night after night is not exactly like sleeping on a lovely temperpedic cloud bed hehe, however I am more interested in the now…the moments we have together…the cuddles we share…the importance of touch and the ability for love to conquer fear!
The kids and I followed Marc out to Florida where he had meetings. I was not sure what do with the kids but decided that we would take the opportunity to head to DisneyWorld. Before going I called to make sure they still had the pass that allowed Chase to avoid the long lines. We have used this in the past because Chase does not have the endurance to stand in lines, his lack of physical endurance, crowds scare him and his inability to regulate his body temperatures. They assured me they still had this service available so we headed on over. I purchased a 4 day pass knowing that we would have to take it slow because Chase putters out fast. Upon arrival we headed to Disney’s town hall to get Chase’s pass. As others who have children with special needs may know Disney CHANGED the access pass. Now what they do is give the child three fast pass tickets (only to be used once). The problem is that this pass is the same line that everyone who purchases the fast pass option uses. I never want to abuse the line system but I know Chase can quickly overheat if I can not get him in the air condition lane fast. They said not to worry the line would move fast and there were plenty of air conditioned lines. Sadly that was not the case. We were in outside LONG lines and I could quickly see Chase having trouble. After only 1 hour at the park he was in BAD shape. He was dizzy, said his head hurt and was complaining about bone pain. I knew the heat was getting to him, especially when he started to fall asleep and I was having trouble waking him (bad sign). I asked where first aid was and quickly headed that way. As I suspected Chase was really overheating, he had fever almost to the point where docs tell us we need to take him to the E.R. We stayed an hour trying to cool him off and he was crying because he said he was freezing (no doubt because of the fever). After an hour we got his fever down to 99.5. Chase felt really yucky but was so sad he did not get to see his favorite ride Small World. I looked at him, looked at Emma who had also not gotten to do any rides and made a decision….MOVE FAST. I literally high tailed it to Emma’s choice, Space Mountain and tried to cool Chase off at Splash Mountain. I knew that Chase would be devastated that he did not get to see Small World. So I carried him, along with the stroller and almost jogged to get him to the ride. When he got on the ride he smiled but I could tell he was still not feeling well. I hoped the ride would last long enough for him to cool down a bit. After that I raced the kids back to the entry as fast as I could only stopping at an indoor ice cream shop to try to cool Chase off again. By the time I got his ice cream Chase was sleeping again, I tried to make sure that he stayed awake (same rules of overheating as to brain swelling and concussion…don’t let them fall asleep). I woke him and cooled him off again and luckily God intervened and offered some nice cool rain as we ran to the car. I did not want the kids to think that the day was a bust so I tried to play up the 4 rides we got to go on and oh the yummy yummy ice cream and told them “WOW we really had an amazing day”, while in the back of my mind I was a wreck…filled with so much worry for Chase. Needless to say I knew that going back to DisneyWorld was out of the question so I called and canceled the additional 3 day pass. Since then I have been trying to keep Chase indoors…which really means in the hotel room. It has been nice though, all of us together just lounging. In the meantime Chase has caught a virus, no fever other than the overheating incident but he has a sad cough and looks pretty sad. Please say a prayer that he kicks this virus soon as we are away from his hospital and docs.
I have found that the temperature regulation issue for Chase is challenging to manage. He overheats outside but everywhere is cranking up the air conditioning and Chase absolutely freezes indoors. If I try to take him to the pool the water is freezing for him and he quickly turns into an ice cube. The best we can come up with is to always have a blanket with him when we are indoors and try to avoid being outdoors until after the sunsets. I am looking for avenues or methods I can use to help him with this issue but from the information I have received it is irreversible. Damage to the brain near the hypothalamus causes this and the damage can not be changed…so now we find the best way to manage.
On a super cute note Chase has taken to calling me mamas and I LOVE it. Despite not being able to do fun planned stuff during the day in FL Emma is still lovely and happy…she has taken he time to practice her singing.
We also have some prayer requests:
Please pray for Parker Harris, he is a boy we met who lives in Tucson and he is AMAZING as is his entire family. He was diagnosed less than a year ago and his cancer has spread and he is now listed as stage 4. Please pray for God to help his parents find the best answers to help Parker. Also pray for doctors to find the answers to give Parker the best care.
Please pray for Yan, Yan also has Choroid Plexus Carcinoma like Chase. He has had trouble for months with his wound in his head not healing. He has had more surgeries than I can count in the past several months to replace his shunt and help him heal but doctors don’t have answers to why he is not healing. Yan is awaiting yet another surgery and needs your prayers.
Prayers for Mikey’s family. Mickey went to elementary school with me and he recently went to heaven after a battle with leukemia. Please pray for his families peace and healing during this time.
My love to you all, thank you for being such a wonderful support system and for all of the prayers.