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Journal entry by Sarah Carney

Merry Christmas and Happy New Year from our family to yours! This year has been tough. Emotionally and physically we are exhausted. I’ve always been a dreamer and goal setter and honestly, this year I felt as though I forgot how to do those things. It’s been a year of survival. Mikah is doing so well and looks so good but still everyday it is filled up with a medicine schedule, worrying about relapse, keeping track of his counts to make sure he is okay to be around people and in school. On top of that we are trying to help the other kids with their schooling and extra-curriculum activities. Also making sure they are getting all of their emotional needs met. Life goes on and really doesn’t stop even when all you really want to do is hide under a blanket. What I’ve learned is that trying to hide gets you no where especially when you are in a dark place. My therapy in someways is sharing our story. I have people tell me all the time that even though they may not always reach out, they appreciate being able to keep up with our family and knowing how and what to pray for. I can’t thank you, our friends and family, enough for helping us stay above the water in this last year. We are so blessed to know that so many of you are walking along side of us in this journey. We know God is with us and before us in all situations. I’m looking forward to this new year. Thank you for your friendship, your encouragement, and your prayers. Xoxo

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Journal entry by Sarah Carney

Mikah went in for his monthly appointment at Loma Linda University Children’s Hospital yesterday. We were pleased to find out that his labs were “perfect”. They were happy with the results of lowering his daily and weekly chemo doses. Although his ANC was higher at 2,600 than the target goal of around 500-1,500 but his ANC has not gone too high meaning the dose is right. It may still take a few visits before his ANC comes down a bit. If the dose is too high or too strong it will knock his ANC down too low. That is why Mikah missed three weeks of school. His ANC was at 400 for weeks and was not going up. It meant his immune system was very compromised and any exposure to illness could have knocked him down. We are thankful that besides a cold and cough he has remained healthy. We have had no overnight stays at the hospital since he was first diagnosed. Many kids get sick and what would take a normal “healthy” child a week or two to recover takes a cancer kids at least twice that amount of time. ER visits are not uncommon for cancer kids. We are thankful that Mikah has not had to be admitted so far. Any fever over 100.4 requires that we head straight for Loma Linda and call the doctor ok call on the way to the hospital. They take any illness very serious. If you think of Mikah and our family please pray that we all stay healthy, especially because of the season, 4 kids in school and what Michael is exposed to daily work. Thank you Ontario Fire Department for your donation of toys to Loma Linda, Megan’s Wings and Chase employees who came to the Clinic on Friday with Santa to bring joy to the kids getting treatment. Mikah was so excited to receive a really cool Batman! #love4mikah #mightymikah #bcellALL #leukemiawarrior 
 

(A few pictures also from Mikah’s school award ceremony where he received the month’s Principle Award and the Leukemia & Lymphoma’s award ceremony last weekend.)

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Journal entry by Sarah Carney

So much has happened in the last month and it feels like there is still so much to do to finish off the year.

Mikah is now thriving in school. It was a rough start and he struggled to find his place back in “normal kid” life while still having to deal with hospitals visits, chemo, treatment, etc. but now he doesn’t complain or cry about school. In fact, he loves it. He’s made sweet little friends and his teacher is so kind and patient with him. She keeps him on track all while being sensitive to any additional needs he may have.

He missed three weeks of school because of low counts. They want his ANC to be above 500 for him to be in school and he was at 400 for over 3 weeks. He was on a complete oral chemo hold while we waited and prayed that his counts would go back up. When they finally did go up his team decided to cut his oral chemo dose in half. What I have learned is that during this stage of treatment called maintenance much time will be spent making sure he is at his right dose for his height and weight and what his body can tolerate. 

In September we found out that Little League baseball wanted to sponsor our boys to be able to play Fall Baseball. We had planned on only having our older boys play because extracurricular activists are expensive with four kids but they wanted Mikah and our boys to be able to play. Baseball was the biggest blessing for Mikah and our boys. They loved every minute of it! Even when Mikah wasn’t feeling his best there was so question for him whether or not he was going to make it to practice or a game. Thank you to Upland Foothill Little League for believing in our boys and giving them the chance to play. 

In October our family and a team participated in the Leukemia & Lymphoma Society’s Light the Night event at the Speedway in Fontana. Our team raised over $6,300 for LLS which finds treatment and cures for blood cancers and also gives financial assistance to families in need battling blood cancer. We have received their urgent need funding as well as a travel assistance gas cards so I know first hand how much they do to help families in need. 

On November 14th Mikah had his scheduled treatment at Loma Linda. He was scheduled for chemo in his spine as well as IV chemo in his port. We were told a few weeks prior that there was a national shortage of the chemo that gets kids in remission and keeps them from relapsing but that there was not enough for Mikah to get his scheduled dose. I did not like this and went into action. Mama Bear was willing to do whatever it took to make sure Mikah got his dose of this life saving medicine. I was able to get ahold of the pharmaceutical company who makes the drug to see what could be done to get the medicine. I was put in touch with the right people because not only did Mikah get his scheduled chemo but so did other kids at Loma Linda who were told they would have to skip their dose as well. It was an extremely emotional and stressful week. It is crazy to think kids all over the country were being told they could not get the medicine they need to survive. I was willing to travel to the other side of the world to get Mikah his medicine was so happy when he did. 

Mikah will be back at Loma Linda on Mikaela’s birthday, December 12th for more labs. Please pray this lower dose of chemo is the right dose for Mikah and that he will continue to fight strong.


We have two more years to go and both Michael and I are feeling weary and emotionally drained. Our minds and bodies are tired. Thank you for your continued prayers and for those of you individuals or organizations who continue to support emotionally and financially. We could not do any of this without your love, support and prayers.

Love, Sarah

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Journal entry by Sarah Carney

It's been a rough month for Mikah and our family. Mikah's ANC counts came back low a month ago so they put him on a chemo hold and we had to keep him at home from school. We went back to the clinic weekly but his ANC never went above 400 until yesterday we finally got the good news that his ANC is at 1,800. The chemo hold worked. He started back on his daily chemo meds last night but we cut the dose in half. The amount he was taking was just too much for his little body and it was knocking him down. We are all feeling a bit drained and exhausted. The emotional and physical aspect of caring for a child with cancer has put a strain on both Michael and I physically and mentally.

We are looking forward to this weekend's Light the Night event with the Leukemia and Lymphoma Society at the Speedway in Fontana. It is not too late to donate or register to walk with us. Registration and Parking is FREE but if you want to join us in the exclusive Team Love 4 Mikah tent you do need to be registered under our team. We would love to see you there and donations help the LLS find treatments and cures for blood cancers. This has become very near and dear to my heart as I have learned there is little research and funding for childhood cancers. No one wants to talk about kids getting sick. It is very taboo but the truth is there are kids and families hurting as their children battle for their lives.

Light the Night:
https://pages.lls.org/ltn/ocie/InlandEm19/love4mikah

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Journal entry by Sarah Carney

Please join us Wednesday, October 9th, 2019 as Pieology in Upland has graciously offered to donated 30% of the proceeds of your order for The Leukemia & Lymphoma Society Team "Love 4 Mikah". All you need to do is print out this flyer or show the cashier this picture at checkout. Thank you!!

Dedicated to curing leukemia, lymphoma, myeloma, and other blood cancers, The Leukemia & Lymphoma Society (LLS), is now the world's largest voluntary (nonprofit) health organization dedicated to funding blood cancer research and providing education and patient services.

Since 1949, they have invested nearly $1.3 billion in groundbreaking research, pioneering many of today’s most innovative approaches. They work tirelessly to find cures and ensure patients can access the lifesaving treatments they need. When someone experiences the fear and uncertainty of a cancer diagnosis, they provide hope, compassion, education and support. And they are making an impact in the cancer community.

Our team goal is $5,000. Donations can also be made here: https://pages.lls.org/ltn/ocie/InlandEm19/scarney

(100% of proceeds go directly to the LLS and not to Mikah or our family)


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Journal entry by Sarah Carney

Please join team "Love for Mikah" for the annual Megan Savage Memorial 5K/1K Run Walk for a Cure in Upland at McCarthy Park on Saturday, September 28th!!

Anyone who registers under Team "Love for Mikah" until Sept 10 will receive a $5 discount if they put in code - Team19. (It asks for the code right away when you are registering.)

We can't wait to see you there and support this amazing foundation!

Click here to register

You can also purchase a team "Love for Mikah" t-shirt here until September 3rd. **These are completely optional. Please join us even if you don't get a shirt! We will also be wearing these t-shirts for the LLS Light the Night event on October 26th.  

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Journal entry by Sarah Carney

We are only a few days away from the anniversary of Mikah's diagnosis. It's hard to even think about the journey Mikah has been on this last year. Two weeks ago Mikah had his monthly hospital clinic visit. At this visit he was scheduled for chemo in his spine and IV chemo in his port. He also started a week of steroids as he will after each of these appointments. He will return to the clinic in another two weeks for labs.

Mikah started Kindergarten this week so we have to keep a close eye on his ANC (Absolute neutrophil count). At this stage of treatment the goal is to have his ANC between 500-1,500. If it is lower than 500 he is very susceptible to illnesses. Now that he is in school, he can not go to school if it is lower than 500. A few weeks ago, we had to put Mikah on a chemo hold because his ANC was at 200. Much if this phase of treatment is finding the right dose for his daily oral chemo. If his dose is too high, his ANC may tank. If his dose is too low, he may not be getting enough chemo. His dose will change often as he grows and weighs more as well. 

Our family has been blessed with some amazing opportunities in the last few weeks. The Jessie Rees Foundation NEGU had a donor who owns a home in the PGA West La Quinta. Our family was able to get away for a few days of rest and relaxation in a beautiful home. On the kid's first day of school another foundation; the Let It Be Foundation surprised our boys with amazing tickets to the Angel's game. Our boys were able to sit in the front row behind the dug out and Albert Pujols even threw a ball to Mikah. We continue to be blown away by the amazing organizations that have come along side us to bring much needed joy in a tough journey. I would also like to think the BumbleBee Foundation who recently supplied us with back to school items. If you know of anyone who is currently in a cancer journey with their children, please encourage them to reach out to these amazing organizations. Many thanks to our hospital social worker and friends, they have connected us to these amazing people. There are many others who also have helped us in one way or another such as Megan's Wings, Adonai Families, to name a few. We could not do it without each of these organizations.    

As I mentioned, our big boys and Mikah returned to school this week. We have been blessed with wonderful teachers and I know our boys are going to have a great year. Please pray for Mikah as he is have a tough time adjusting to the classroom and his new environment. He still is pretty standoffish and not interested in connecting with his classmates. He is afraid to play on the playground and only wants to sit and watch the other children play. We wonder if it is fear of getting sick, if the playground and or school remind him of last year when he was diagnosed or just because we have been home so much in the last year and he has had us with him 24/7. He is such a tough kid so it is really hard for us to see him struggling with his new schedule and environment.

Thank you for your prayers and love for Mikah!

Journal entry by Sarah Carney

Hi everyone! We decided to design a shirt for Mikah and to also have as a team shirt as we walk LLS Light the Night in October and Megan's Wings in September. We would for you to join us in either walk (or both) and our hope is that the shirts can encourage Mikah in his journey (share your pics) and bring awareness to childhood cancers. Love to you all!

https://www.customink.com/fundraising/love4mikah

Journal entry by Sarah Carney

Mikah returned to the hospital clinic today to get labs done after about a 10 day chemo hold. Unfortunately his ANC is only at 200. A non-cancer normal person’s ANC/immune system is at 2,000-4,000. Mikah should be at 500-1,500 during this phase of treatment. We are continuing a chemo hold and his weekend antibiotics for another week to see if this will cause his ANC to come up. They aren’t really worried until it has been a month of low ANC. We aren’t there yet but I still don’t like it. Please pray we see these numbers go up. For now it is hibernation time again. Back to masks in public and keeping away from crowds. (I asked if our trip and time away could have caused the low ANC and was told no.) #mightymikah #love4mikah

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Journal entry by Kristie Carney

From Sarah: What can we say except Thank You for coming along side us to help our little Batman fight this battle! A meal, a call, a note of encouragement, an offer to drive us or sit along side us, we already in less than 24 hours feel so incredibly loved and know together with our friends and family can help Mikah get better. Before I (Sarah) left for Sweden, Michael had mentioned that Mikah had a strange color to his skin. Kind of a pale yellow and the color is his eye and gums seemed dull. I guess we didn’t think much of it because in the morning he would be back to his normal self. On Thursday at school pick up Mikah’s amazing teacher mentioned to Michael that Mikah had been off all day. He didn’t want to play, didn’t want to eat, and couldn’t keep his eyes open. Michael said he had been going to bed at 8pm and sleeping a solid night so he knew something wasn’t right. Michael decided it was time to get him to the doctor. He called his friends at Pomona Valley and they got him a bed right away. At Pomona Valley blood work confirmed that something was wrong. His red and white blood cells were low and he was anemic. They said they need to transfer him to another hospital so that he could see a specialist. Together with the ER doctor, Loma Linda University, was chosen. He was taken by ambulance on Thursday night. Friday morning doctors decided they needed to do a biopsy of his bone marrow and that would help find out exactly what was wrong. In about an hour they confirmed our worst fear. Mikah has B-Lymphoblastic Leukemia. He will start chemotherpy today. The first 26 days are the most intense and then he will continue treatment for 3 years. We are still processing this news. We know we can trust God with Mikah and this. Thank you for reaching out to us and asking to help us. I don’t know exactly what that looks like yet, but I know we will not say no to any help that our friends and family want to give. Thank you for your prayers. I (Sarah) get back to California on Monday but our flight lands at 5pm in Oakland. I will drive back to Fresno and on Tuesday morning I will drive back home. It feels terrible to be away and I just want to see my precious boy.
Mikah’s Story

Site created on September 15, 2018

Friends and family...welcome to Mikah's CaringBridge website.  We (the TEAM) have decided to set this site up for Michael and Sarah. Please know they have not asked for any of this, however, it is necessary.   We are gratefully overwhelmed by the amount of people who would like to help and our goal is to have ONE location that you can do just that! We are using this site to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement.  On this site, you will find many ways to help, and a place to get some updates as well as a place for you to send encouraging words! We love and appreciate all of our family and friends for your willingness to help and your love for our family.

On this site, you will also find the link to the MealTrain here (https://www.mealtrain.com/trains/m8orm6), the link to the donation site here (https://sbcbf.org/), as well as a link to a sign up for other items that may be a blessing to Michael and Sarah and the kids here (https://www.signupgenius.com/go/30e0b44aaa723a5f49-love) or please click on the hand and heart icon that says "Ways to Help". Thank you for visiting.





       Dear Family, Church Family, Fire Family and Friends,

 

On Friday, September 14th, 2018 we received the most devastating news of our lives. We learned that Mikah, our brave and Batman loving four-year old has B-Cell Acute Lymphoblastic Leukemia. It is still hard to think about all that has happened in these last few days. He was first admitted into Pomona Valley Hospital Medical Center on Thursday afternoon the 13th because of Michael’s intuition that something wasn’t right. At Pomona Valley Hospital they confirmed that his Red and White blood cells, along with his Platelets were low but they would need to send him to a children’s specialist to give an exact diagnosis. Michael asked the doctors if Mikah could go to Loma Linda University Medical Center. At first they told us that it is very difficult to get into Loma Linda. Loma Linda University told Pomona they didn’t have a bed open for Mikah on the children’s floor but that they would find a spot. They opened up a spot on another floor until a bed was available in the children’s hospital. After a team of specialist did the bone marrow biopsy, it was confirmed that 91% of Mikah’s bone marrow was full of leukemia and that he would be starting a very aggressive 28 day regiment of chemotherapy the following day. The goal is to reduce the leukemia cells to 0.1% in the first 28 days. We know Mikah is in the very best hands at LLUMC and are so thankful for all the talented Staff and Doctors here. 

 

Now we begin this journey that we never imagined that we would be on. It is heartbreaking to watching your sweet and lively four year old become sad and somber. We think about our three other children and how life is going to shift so quickly for them also. They are also worried about their brother and just want him home. We know we cannot walk this cancer journey without the love and support from you, our family and friends. We are trusting that the God who blessed us with our children will also be along side us every step of the way in this season of life. We appreciate and are so thankful of the overwhelming amount of Love and Support we have already received. We can’t thank you enough for loving our little Mikah. 

 

Love,

 

The Carney Family 

 

 “Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.” 2 Corinthians 4:16:19


                           




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