Journal

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 Sarah Carney

May 21st, 2019 will be 250 days since Mikah was diagnosed with B-Cell Acute Lymphoblastic Leukemia and his first day of MAINTENANCE. We were told that the first 6-9 months are the hardest and that the next 2 1/2 years will also have difficult moments. The last 250 days have been tough. It's horrible to bring your beautiful child into the hospital clinic knowing they are going to be pumping his body with poison and knowing that without that poison your child may not live. There is nothing fun about cancer. This is a trial I would not willingly chose again or wish anyone to have to go through. We will never be the same. If I let my mind go to dark places, I think about the fact that Mikah still has 30 months of treatment to endure and after that if everything goes "well", we still have 5 years to wonder if he will relapse. Basically, for the rest of my life, I will have to think about cancer. This journey has changed us. BUT, it has changed good things in our lives too. I've said it before and I will say it again. Prior to this, there were things in my heart that were taking up space of things that should have been there instead. 

"Create in me a clean heart, O God, And renew a steadfast spirit within me." Psalm 51:10 

I had the opportunity to attend our churches women's conference "Renew" this weekend and I wanted to cry when I saw this verse up on the screen as soon as I walked into the sanctuary. This trial in our lives in not one I would chose and yet God has used it in so many ways, including my life, to teach me about His love for me and His children. I saw a quote that said "God uses broken and hurting people to help broken and hurting people". Mikah was not given cancer as a punishment, rather He is using a broken thing from this world and is instead showing us what beauty from ashes means. I read this recently from a blog, and I couldn't have said it any better: 

"Yes, it’s true, life is not always happy. It’s not always easy. It deals harshly sometimes, it seems unfair, and we may wonder where God is, or why He didn’t stop that difficult event or illness from happening.

His Truth says this: He was there. In the midst of it all.


And though we may not always see it, or feel it, or even understand it, we can know beyond a doubt, that He is now. Still. He is with us.


"To provide for those who grieve...to bestow on them a crown of beauty instead of ashes." Isaiah 61:3


For He will never leave us or forsake us, His love for us in greater than we could ever imagine, though we live in a world where we face trouble many days.


Jesus reminds us in John 16:33, “In this world you will have trouble, but take courage, for I have overcome the world.”


And that’s the key to the ashes that cover our days in this life. The deeper Truth that shines through every bit of our grief, and pain, and sin, is this, Christ came to set us free. Christ came to redeem. Christ came to bring hope. Christ came to bring beauty from ashes.

Take courage dear friends who are facing deep battles. He is greater than any enemy we face in this life. We overcome because He has overcome and our lives are hidden in Christ. May God cover you with peace, may He bring healing in the face of hard news, may He bring deep, abiding joy that makes no sense to the world, may He bring comfort and care as He wraps you in His arms. The God of miracles fights for you today, and He is Mighty.


There's still beauty ahead...straight out of ashes. Christ redeems. Grace."

Thank you for your continued prayers for our Mikah. On May 21st, he will have chemo in his spine and will do so every 3 months from now until the end of treatment in November 2021. He will also go into the clinic once a month for chemo in his port. We still have to be careful with illness and sickness but life can resume a little bit back to "normal" for a 5 year old. He will also have daily meds and steroids for 5 days of the month when he receives chemo at the clinic. He's amazing and handles all of this without complaining. His strength makes us stronger. 

For those of you who continue to ask how you can still help, San Bernardino County Fire is still taking donations to the benevolent foundation here. Thank you!


 

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Journal entry by Sarah Carney

Thank you again to the team from SBCoFD who climbed the Firefighter Stairclimb in Seattle this year with the Leukemia and Lymphoma Society! So far $2,912,436 has been raised to help find cures for blood cancers! It was so touching to see Mikah's picture on so many of your helmets!

Thank you for your continued support of the San Bernardino County Fire Benevolent Foundation which has helped us pay some of our bills during this difficult trial! ttps://sbcbf.org/

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Journal entry by Sarah Carney

Mikah’s counts were great on Monday! He was able to receive one spinal chemo and two other chemo drugs in his port as scheduled and he was able to receive a higher dose, which he was not able to last treatment. We are so close to maintenance I can almost see it! Mikah’s child life specialist talked to me today a little bit about maintenance. She said it can be scary for parents because visits and IV chemo will only be once a month instead of every 7 or 10 days. At this point there is some comfort in getting Mikah’s labs done every week or so. The clinic becomes in some way a comfort zone for parents, which I completely agree with. It will probably take me some time to adjust to a new schedule but I will try to take it day by day which is the advice they gave us from the beginning.

We also have a praise
 report.. We haven’t told too many people, but a few weeks ago when Mikah had his last LP or spinal chemo, they sent off some of his his spinal fluid for testing. They found some abnormal cells. They weren’t yet worried and didn’t want us to worry but they told us they would need to test more spinal fluid the next time he has a LP, which was Monday. We got the call that the spinal fluid came back clear! 🙌🏻❤️ Mikah went to bed last night feeling pretty awful and nauseous but today he is all smiles! #mightymikah #loveformikah #bcellall #acutelymphoblasticleukemia #childhoodcancerawareness #worthmorethanfourpercent

Journal entry by Sarah Carney

Happy Easter from Mikah and our entire family! We are thankful that Mikah has felt well since his last treatment and was able to join us at church today and some time outside now that the weather is warmer! Thank you for your continued prayers. Mikah has treatment tomorrow, Monday, April 22nd. It will be his last scheduled chemo in his spine during the Delaysd Intensification II phase. We are praying that Mikah will be begin his Maintanance Phase in May!  

Journal entry by Sarah Carney

The last few weeks have been tough. Mikah is about 1/3 of the way done with Delayed Intensification Phase 2 and it has been a hard phase. Mikah woke up three days in a row after his last chemo complaining of nausea. He also spent the afternoon at the park one afternoon and before bed was running a fever which required an Emergency Department visit at Loma Linda University. This past week we were worried that Mikah's counts were too low. In only a few days his body was covered in new bruises and he had several bloody noses in 24 hours. He went into the clinic to get labs done and they showed that his counts were low but not low enough to require a blood transfusion or platelets. Today Mikah was scheduled for chemotheropy at the clinic but his counts were still too low so chemotherapy was delayed until next Wednesday. Thank you for your continued prayers. We will be very thankful when we are out of this phase and into Maintenance, hopefully by the end of May or June!

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Journal entry by Sarah Carney

Young Ontario "Honored Hero" Becomes a Charger for a Day

What an incredible day for Mikah and our family!! Mikah’s Honored Hero poster was revealed at the The Leukemia & Lymphoma Society office where we got to meet an amazing group of staff and volunteers and an incredible man, Scott Quessenberry, whose brother David is a cancer survivor and also an NFL player.

We were taken to the Los Angeles Chargers amazing training facility where Mikah got to sign a NFL contract and meet more incredible people! He was a little shy at first but started to warm up. We are so thankful and amazed at this opportunity!

Thank you Chargers and LLS!!

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Journal entry by Sarah Carney

We were so honored to be one of 46 “Courageous Families” asked to attend the Team NEGU: Never Ever Give Up Eighth Annual Jessie Rees Foundation Gala and stay a night at the Disneyland Hotel! Everyday, 46 kids are diagnosed with cancer. Mikah had the opportunity to present an award in front of over 700 people with NFL Fullback Johnny Stanton! Mikah was so excited to get to go on this mini trip and packed his entire suitcase himself. We are all so thankful for this opportunity to get away for a night and meet some other warrior kids and their families!



Jessie Rees was a beautiful, athletic, smart and compassionate 12 year old girl who bravely fought two brain tumors (DIPG) for ten months and two days. Her fight started on March 3, 2011 and ended on January 5, 2012 when she earned her angel wings.


During her courageous fight, Jessie decided to focus on helping other kids fighting cancer. This desire led to the creation of her fun-filled JoyJars® and Never Ever Give Up (aka: NEGU®) message.


Today, JoyJars and NEGU are recognized symbols of hope, joy and love in over 29 countries.”

#joyjars #jessiereesfoundation #disneylandhotel


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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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