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.
June 10, 2014
It is officially summer!!! It is wonderful having the kids home, they are definitely making up for lost time and it is wonderful to see them play together. I can tell that the extra activity is making Chase much more tired. It is good to build up his stamina before school begins and Emma encourages him to play more. Chase has ventured out to the pool a few times but is definitely leery. I am trying to come up with activities that are in a cool area for him because he is still so very heat sensitive. This proves to be rather hard sometimes in AZ but we are trying. We are trying to wean Chase from his Gabapentin (for bone pain) as he was on a pretty high dose but it has not been going so well. He is complaining more and more about pain in his extremities so we are going to add back in the Gabapentin. It seems like as we try to wean him off of medications his med list continues to grow. He is on a vitamin D supplement because he is deficient. I asked the doc if it means he has to spend more time in the sunshine and she said no, she said most kids come off of treatment with a vitamin D deficiency. We also added in a medication to try and help his belly. He has been a real champ about taking his medication but at times he has so many he becomes nauseated and we have to allow more time in between dosages.
I am still trying to get him to eat better and put on a bit of weight but it seems like a circular race. I find something he likes….he eats it for a week, I stock up on his favorites and all of the sudden he does not want to eat it anymore. I would love for him to eat healthier and add more fruits and veggies to his list but the list of what he likes seems to get smaller and smaller. Please pray I am able to come up with some healthy ideas he loves.
Chase’s hearing aids are still a work in progress but I have been researching his hearing aids and have learned that technology is pretty amazing. There is a accessory that acts as a middle port for blue tooth connect, he could connect his hearing aids to any device that has bluetooth and stream directly into his hearing aids. There is also a device for the TV to have the sound stream directly to his hearing aids…pretty cool but also pretty expensive so we are going to put in on the back burner for a bit. When he goes to school in the fall there is a device that will allow Chase to hear the teacher piped through his hearing aids but I am afraid that it would take away from the overall experience of being with his classmates and interacting with their conversations so we are just going to see how the year goes. Now that he has his hearing aids I notice more than ever how much he misses when he takes them out. He can miss an entire sentence or get the words very mixed up. I can’t imagine how confusing this must be for him. He is very responsible about them and when I take them out, he makes sure that they are put away in their designated spot in his room.
Marc has a business trip to Florida coming up so the kids and I are tagging along. I am hoping Chase tolerates the travel and does not catch a virus. I also hope we are able to create some lasting memories as a family.
Although Chase is still very scared of his scar on his chest from the broviac removal we have made a few strides. He is still reluctant to shower but for the first time tonight he took a bath without a single tear…yay SUCCESS!! He is very self conscious and it is a definite controlled process, nobody other than mommy is allowed in the room while he showers, he covers his scar with a washcloth and I am not allowed to get near his chest with the soap, but it is okay because we are figuring it out together.
Emma is enjoying summer as well. Our little teenager loves to sleep in, so she is pretty excited. She is still LOVING her riding lessons and works hard. She is learning to gallop with NO HANDS to learn balance…it is pretty amazing. It is so nice to see her smile and to see the sparkle back in her eye. I can tell she misses her teacher and she talks about her often. She also wonders when she will be able to see her again….that warms my heart.
I am going to try and work with the kids a bit this summer to prepare for school next year. I am going to work with Emma on her reading and Chase needs to relearn his phonics since he is just starting to hear things differently than he has the past 10 months.
It is hard to believe we are coming up on a year since we heard the words “relapse”. In many ways the past year seems like an absolute blur. It seems like our emotions are still raw and playing catch up. After we left treatment the last time I learned that it was emotionally harder after treatment than it was during. During treatment you are in hyperdrive and things are moving so fast you go into survival mode and you can’t possibly soak in all the emotions. Once things quiet down a bit that is when all of those emotions come flooding back one by one. I have learned that it is also this way for Chase. He has been talking about treatment more than ever lately. He asks questions, he reminisces about difficulties he encountered and of course he wants to be assured it is all behind him. I wish I could promise him that it is all over but I never want to be in a position that he would think I was not honest with him. I try to focus on the positive and give short time frames. I tell him about a day at a time, “no hospital today, no appointments today…just play time”. I hope in time the hard moments will be a distant memory…covered by moments of joy and love.
I am so very grateful that God has been with us and held our hands throughout this journey.
Hold your family close and God bless.
We have been really working on getting Chase to wear his hearing aids all day. Some days are better than others. There are moments where he is so overwhelmed he does not say a word and just bursts into tears because he is overwhelmed and others where he acknowledges he does hear better with them. Because they are so expensive and sooooo very little I am always panicked about loosing them. Well I had my first mini heart attack yesterday. It was close to 3pm and he begged for a break from his hearing aids as we were leaving the house to take flowers to my mother in laws grave for her birthday. I told him we could take an hour break so I took them off and placed them in their case and held the case in my hand thinking we were on our way out of the house….well…you know how it is getting out of the house with kids. Everyone wanted one last drink of water, someone forgot their favorite toy and I was running in and out. Once we got on the road Emma said something to Chase and Chase did not hear her which immediately reminded me of Chase’s hearing aids and the fact they were not in the car with us. I turned the car around panicked stricken that the dog would get to them (the doctor told us that the ringing they make when they are out of the ears drives dogs crazy and they chew them up to make the sound stop). I ran inside and looked everywhere and could not find them. I retraced each of my steps and opened the lid to the trash and there they were…sitting on top. I must have tossed them in with the hand full of trash I had in my hands trying to get out of the house. FEWF!!!!! so glad I found them. Then today Emma walked up with Chase’s hearing aids in her hand saying, “look mom I showed Chase I could take out his hearing aids for him”. I momentarily panicked and made sure all the pieces were all in her hands and luckily they were…double FEWF. I told the kids to not take them out unless momma was there and they agreed but wowza these little things seem hard to keep track of.
It was a good day today and I started my prayers as I always do, “Thank you Lord for another day together as a family”
God is GREAT
March 15, 2014
We just returned from our trip to Philadelphia,
Here is the story I wanted to share.
I always carry singles in my wallet because Emma always wants to give money to the homeless. As we walked along the streets of Philadelphia a woman who was sitting on the corner caught Emma’s eye. Emma said, “Momma she looks so sad, can we please give her more money than we usually do?” I handed Emma some money and Emma walked up to the lady with a smile and handed her the money and told her to have a nice day. As we walked off Emma tugged at my hand and said, “Momma I really want to get her something to eat.” There was a Walgreens close by so we stopped in and Emma picked out a sandwich, chips, desert, a drink and a rose for her “friend”. Emma skipped out the store hoping to find the lady. The lady was still on the corner and Emma was so pleased. She ran over and gave the lady the things she had gotten her and the lady began to weep. The lady followed Emma over to me and said thank you. She went on to say that she had a little girl named Faith Johnston who was 18 months old that had leukemia and was staying at Childrens Hospital of Philadelphia. I asked her if she knew about Ronald McDonald House. The lady said that she stayed there for a while but after she checked out one day she lost her place. She said she was now sleeping on the steps of a church nearby. Upon learning that the lady had a daughter Emma looked down at her new stuffed animal she had gotten from the zoo earlier in the day, she lifted it up to the woman and said, “please give this to your daughter”. The woman said thank you and also said to say a prayer for her because she had a job interview at CHOP (Childrens Hospital of Philadelphia) the next morning. I handed her a bit more money and told her to please have breakfast in the morning and that our prayers would be with her. My heart tugged for her because I know so many families that are financially ruined when they have a child with a life threatening disease. I gave her my cell phone number just in case.
After that we headed off to dinner close by. As we sat at the table I noticed that Emma looked very sad as her eyes fixed on the table. I asked her what was wrong and she looked up and said, “There are so many homeless people I did not help.” I told her the story of the boy and the starfish, for those of you who have not heard it it goes like this:
A man was walking along a deserted beach at sunset. As he walked he could see a young boy in the distance, as he drew nearer he noticed that the boy kept bending down, picking something up and throwing it into the water.
Time and again he kept hurling things into the ocean.
As the man approached even closer, he was able to see that the boy was picking up starfish that had been washed up on the beach and, one at a time he was throwing them back into the water.
The man asked the boy what he was doing, the boy replied,”I am throwing these washed up starfish back into the ocean, or else they will die through lack of oxygen. “But”, said the man, “You can’t possibly save them all, there are thousands on this beach, and this must be happening on hundreds of beaches along the coast. You can’t possibly make a difference.”
The boy looked down, frowning for a moment; then bent down to pick up another starfish, smiling as he threw it back into the sea. He replied,
“I made a huge difference to that one!”
I told Emma that what she did mattered and we could help people one by one.
The next day I received a call from the lady, she wanted me to tell Emma that she used the money to buy a dress and sandals for her interview and that she GOT the job. She said they were moving Faith to Delaware and that the woman was going to be set up to stay at RMC close by, but that she could still hop on the train to her new job at CHOP. I congratulated her and sent her my best.
Later on in the day I decided to call CHOP (Childrens Hospital of Philadelphia) to see if there was anything baby Faith needed before she headed to Delaware Childrens Hospital. When the receptionist answered I asked to be transferred to Faith Johnstons room. After a brief moment the receptionist said, “I am sorry but we do not have patient by that name”. I wondered if she had already been transferred… I also wondered if she was there at all. What happened to baby Faith… I don’t know but I do know I will continue to pray for her and the lady.
I am proud of my Emma for always having a giving heart of pure gold.
April 25, 2014
Chase is absolutely wiped out exhausted! We received primary results from the MRI listing Chase as “stable”. No new growth! We will still need to await the final reading and we will need to wait for two more docs to review the scans. However, we are happy with these results and now we are trying to push to get Chase’s lines taken out so he can go swimming and take a bath and more than anything….be a KID. All the glory be to God. Thank you for your prayers. We still do not have the results on how his organs have faired threw this process so please keep Chase in your prayers.
Well, it was a VERY long day. We arrived at the hospital at 6:45 and Emma was in full on BIG sister mode. She “pinkie promised” Chase she would not eat or drink until he could (because Chase was on no food or drink due to sedation). She even fussed when I tried to give her allergy meds this morning because she said it was like eating and she was not going to eat without her brother. Chase was a bit grumpy because he was hungry and thirsty and Emma tried to distract him. He went in for his MRI a bit late and nearly jumped out of his chair when he saw the anesthesiologist come in. He said “okay I am ready to go… I am hungry and want to get my sleepy medicine so I can go eat”. The anesthesiologist said Chase may have been the most enthused patient she has met. It was hard for Emma to stay behind while I went into the gantry with Chase. She desperately wanted to be with her brother. Chase gave Emma a hug and then ran to the MRI room. He hoped up on the table grabbed the mask and gave me the a thumbs up (which is my cue to start sining while he falls asleep). He drifted off to sleep and I gave him a kiss and asked the doctor and nurses to please take care of my baby. He was in for nearly 2 hours and then they called us back into the recovery room. There was another little girl in recovery that was screaming and crying as she woke from anesthesia and I could tell Emma was worried for her and kept checking on Chase worrying that he would wake up the same way. Chase was curled up in his blankie and Emma stood by his side waiting for him to wake up. I told her that Chase likes to wake up slowly and it could take a while. As always our boy wanted to enjoy his snooze, he asked for a warm blanket and covered his head and went back to sleep. Emma covered Chase’s ears so that Chase would not be woken or upset about the other little girl who was still very upset. He slowly got up and was doing well. He was so hungry but there was no time to go to the cafeteria because we had to go straight to imaging for his scheduled chest X-ray. We were supposed to be next in line but there were several emergent cases that had to be taken in. We waited for more than 45 minutes and we were now late for the next appointment at cardiology. Chase was not happy about the wait and was very hungry. Luckily I packed some snacks and I tried to keep him happy until we were called back into the imaging room. That test did not go well, Chase did not want to take off his shirt because it would expose his broviac and he was crying saying “I am embarrassed and I don’t want to take off my shirt”. These are the moments that are so hard, I had to fuss with him to get his shirt off and beg him to stay still for the pictures. After that we rushed to cardiology because we were now very late. The first test was the EKG and Chase is NOT a fan of this test because he absolutly despises the stickies they have to put on AND he had to take off his shirt again…he cried the whole way through. I wish I could tell him we were all done after that but we were not, we still had to do his ECO Cardiogram. By this point Chase was tired and was DONE with all of this testing business. He was so sad and cried and told the lady “I am scared”, they tried so hard to make him feel better. One nurse brought in bubbles and another offered a light up ball but he was already scared and crying and nothing was helping. After this test poor Chase had sad puffy eyes from crying and it broke my heart to tell him we still had to go to clinic for labs and a check up. He cried and pleaded saying “please no more today”. So that was it, I knew he was done and I respected that. I called the clinic and asked that our appointment be changed until tomorrow. Chase needed a break….and I knew it. The good news is that we are done for today, the difficult news is that tomorrow we have three more appointments. We meet with the neuro surgeon, then we have to go to clinic for labs and a checkup and then we finish up with pulmonary testing. I hope that Chase is able to get some rest and is able to do yet another day at the hospital. It breaks my heart he has to endure so much and the worst is to hear his say he is scared. The truly AMAZING thing about Chase is his ability to bounce back. He took a well deserved trip to the toy store and was smiling and happy within a few moments. He is teasing Marc and I saying he gets to stay up EXTRA late tonight because his sleepy medicine helped him take a nap this morning. I think Marc and I will allow him to have his moment….he earned it. Thank you all for your prayers.