Journal

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 Sarah Carney

Today Mikah had his second appointment in the maintenance stage of treatment. We were hoping it would be a quick visit with good labs. Unfortunately his ANC came back low at 200. In maintenance, the goal is to have his ANC in-between 500-1,500. At this point in treatment Mikah's doctor is not concerned. She said that is is very common for the ANC to be off and that there may just need to an adjustment in the amount of oral chemo he is getting. The doses he is getting now may just be too high. We are going to take a week hold on all oral chemo that we give him on a daily and weekly basis and see if his counts come back up. It also means we have to be extra cautious again with germs and exposure to illnesses. Please be praying that his counts go up and that we can find the right dose for his oral chemo.

*ANC: A measure of the number of neutrophils in the blood. Neutrophils are a type of white blood cell. They help the body fight infection. An ANC may be used to check for infection, inflammation, leukemia, and other conditions. The lower a person's ANC is, the higher the risk is of getting an infection. Having an ANC of less than 500 means there is a high risk of getting an infection. Cancer treatment, such as chemotherapy, may reduce the ANC. Also called absolute neutrophil count.

Journal entry by Sarah Carney

It's hard to believe that on July 14th, it was 10 months since Mikah was diagnosed with Leukemia. We have so much to be thankful for! Mikah is feeling amazing and looks incredible!! We have really enjoyed the lazy days of summer. Sleeping in, days at the park, swimming, and visiting with friends have all been a welcome change to busy school days and clinic visits. The longer visits in-between clinic days are a blessing but it is taking some time to get used to not always knowing where Mikah's counts are. Mikah’s next appointment is on July 23rd. Please pray that his counts are where they need to be in maintenance and that Mikah continues to feel healthy and strong. We also have some exciting news to share about the type of Leukemia Mikah has and some changes that have happened in the childhood cancer world in the last few months in regards to treatment. We will be sharing soon! I'll say this for now, prayers are being answered! #love4mikah #mightymikah #bcellall #maintenance #completiondatenovemeber2021 #childhoodcanceraweness

Journal entry by Sarah Carney

THANK YOU! Together we raised over $364,000 in 12 days! Your donations benefit the Patient Travel Assistance Program in Southern California, which helps blood cancer patients who have significant financial need travel to doctor appointments and treatment centers. Thank you for helping us make a life-saving difference in the communities we serve! To learn more about the Patient Travel Assistance Program visit https://www.lls.help/ #StaterBrosCharities #StaterBrosMarkets #LeukemiaLymphomaSociety #LLS #love4mikah #mightymikah #childhoodleukemiawarrior

****There are more ways you can help!!

Join us in bringing light to the darkness of cancer! We are forming a fundraising walk team for The Leukemia & Lymphoma Society's (LLS) Light The Night. Register today to join our team or make a donation and help fund cancer cures!

Please join team Love4Mikah here! We can't wait to see you on October 26th at the Auto Club Speedway of California at Fontana!

Cancer is tough, but Mikah is tougher! Thank you for your support.

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Journal entry by Sarah Carney

As the Leukemia & Lymphoma Society’s Honored Hero, Mikah has been given the honor to be the “face” of the Stater Bros. Market retail campaign which funds the Southern California Travel Assistance for patients in our local community.

Help Support cancer patients in THIS community. Stop by @StaterBrosMarkets June 4th-16th to support the Patient Travel Assistance program.

If you feel so inclined, please share this opportunity to support the mission via your social media.

Tag @staterbros @lls_ocie and #love4mikah

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Journal entry by Sarah Carney

Returning to the hospital clinic for treatment on Thursday wasn't the easiest for either Mikah or myself after almost a month break. Mikah wanted to to know if "this" was his last treatment. I had to explain that even though he is done with most difficult part of his cancer treatment, we still have to go back once a month to get medicine to make sure the cancer stays away. This made his port access a little difficult and while he was getting his chemo in his spine, something he will have to do every three months, he was pretty anxious about it. He was pretty stiff and the sleepy meds weren't really working for him. Despite the yucky stuff, he was all smiles when it was time to leave and he was back to his normal cute self in no time at all.

We are so thankful for the wonderful care he is under at Loma Linda University Children's Hosptial. The nurses and staff were all celebrating with us the beginning of Maintenance! It was a beautiful little light at a end of a very long dark tunnel that I pray we never have to go through again.

#love4mikah #mightymikah #childhoodcancerawareness #bcellALL #acutelymphoblasticleukemia

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Journal entry by Sarah Carney

Many of you ask how our other three kids are doing and I realized I should give an update on the awesome Super Siblings! Shortly after Mikah's diagnosis our older boys Mattias (11) and Markus (7) were scared for their little brother. They knew a little bit about cancer but mostly what they knew were the scary parts about cancer; the sick kids in the hospital, the kids with bald heads, the kids that didn't survive their cancer journeys, etc. I think in some ways that is what we all thought about when we first got Mikah's diagnosis. I worried how the kids would do in school; would they fall behind, would they miss a lot of school, would they have a change of attitude or not get enough attention from us? Well, we always say how strong Mikah is, but I also need to publicly say how proud we are of our other three for how strong they are also! 

Mattias is finishing 5th grade strong! He had straight A's last trimester and is on track to receive straight A's this trimester as well. I am so thankful for his teacher this year who didn't let him get off track! She pushed him and encouraged him! School was a happy place for them to just be normal kids without the worry of what was going on at home. He has started playing the clarinet in the school band along with some of his best friends. We unfortunately had to take a long break from our regular schedule of Jiu-Jitsu but we are back and he is just as strong as ever! His professor told us he is ready to move up to the advanced class with the teens and adults a few times a week. He will also be competing at a tournament as soon as school gets out. It's hard to believe he will be moving on to his last year of elementary school next year! Bitter sweet for sure!

Markus has loved 1st grade and has learned so much! I am also thankful for his teacher who I also believe was the perfect teacher for him this year! I believe she brought out the best in Markus. He loved going to school every single day and to me that is the most important thing! He is really enjoying learning to read and write. He started Baseball this year and LOVED it! It was really neat to see him fall in love with a new sport. Markus recently got to travel to Colorado for the weekend to visit his Aunt and Uncle and Cousins. He had the best time and cried when he got home. I am so thankful he has friends and family who love and make him feel special. Markus has also become quite the comedian. He keeps us laughing all day long with his silly dances and quick wit.  Both Mattias and Markus have perfect attendance for the year and haven't been late to school once! (I will give myself and my mother-in-law who takes them to school for me on Wednesdays, a pat on the back for that one.)

Mikaela just finished her first year of preschool! She got to have some very special ladies as her teachers who also happen to be Mikah's teachers his first year of preschool.  I was always happy to drop Mikaela off at school because I knew she was in the best of care and would get to just play and have fun with her little friends from school. She surprised me a few weeks ago by drawing me pictures of people with the cutest little details. Mikaela has gone to the clinic with Mikah a few times and she really enjoys spending time in the playroom with the other siblings and patients. She doesn't seem at all phased by the tubes, masks, etc. I appreciate that she is being exposed to the hospital setting so that she will have a little bit of an understanding of what Mikah is going through. Who knows, maybe she will grow up to be a nurse and take care of kids. To Mikaela, Mikah is just her big brother that she loves and wants to play with.

Also a little update on Mikah's schooling: Despite having to fight cancer, has also grown in more ways than I can count. His school and school district have been so supportive and helpful in more ways than we could have ever hoped for. Right away, the district approved a home hospital teacher for him to come to our home three days a week, something that wasn't usually done for transitional-kindergarten students. His teacher is so fun and kind. Some mornings he has a tough time getting in school mode, but she is always able to help him get out of his bad mood and start working. Although he maybe isn't exactly where he would be if he were in school and not sick, he has had incredible growth! He knows almost all of his letters and sounds (most of the time), his numbers, shapes, is learning to read, learning to write, addition, etc... His wonderful TK teacher has also come on her own time to work one on one with Mikah on some of the same things his classmates have worked on. I so appreciate her love and support to help keep Mikah connected with his classmates. She even have several things on display for us to see at the school open house. I am so confident that he is going to do just fine as his doctor has cleared him for Kindergarten next year. Pray that that transition will be smooth. I still want to keep him in my little bubble and away from sickness and germs so I am nervous but am willing to give it a try! 

Thank you for your prayers for Mikah and our family!  We are excited to see what the future holds and mostly just want to see Mikah continuing to heal and we always pray that the cancer stays away and never returns.

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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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