On June 29th he will receive his last spinal tap. It hurts my heart to see him go through these but I am excited to tell him this is the last one forever! What a wonderful day this will be. I am sure I will cry for many reasons this day. I hope my wonderful family is there to help me get through this. The last IV chemo dose is scheduled for the last week of July. We look forward to Kaedyn being sung a special end of treatment song by the Oncology outpatient staff and he will be able to ring the bell. All children get to do this at their last chemo treatment. A few other children from Ocala are completing treatment the same month as Kaedyn so they will be singing away.

I really wanted to do a blog today as it is a special day for a little boy that is dear to me. His name is Matthew and he has Infantile Leukemia as well. He has received every chemotherapy treatment known to treat Leukemia and the cancer is not responding at all. He has been at St. Jude’s once already for the experimental treatment using a parents Natural Killer Cells which has failed. Matthew is so amazing because this little boy has been through the worst of the worst and he is always smiling and playing. They did a bone marrow biopsy and found that 97% of his cells were cancerous and Matthew was walking, playing and laughing. When Kaedyn was 100% full of cancer he was in agonizing pain and was eventually unresponsive and lethargic. God is surely protecting Matthew and helping him in the area of suffering any pain. Today, Matthew is receiving an unmatched bone marrow transplant from his mother. Usually they test the patient and donor to make sure they meet the match criteria of hopefully a 6/6 or possibly a 5/6. Matthew and his mother do not match so this makes it very risky. Transplants are so harsh on the body and Matthew’s will probably be even harsher. The Oncologist at the hospital where he is receiving treatment gave him a 0% chance of survival. St. Jude’s Oncologists say this is the last chance for him. The transfusion will begin very soon.

Pennies for Phoebe is almost coming to a close. Just a few more days, so please get your donations sent to me by the PayPal account or we can hand deliver them. Thanks to all those who have participated. More children like Matthew, Phoebe, Piper, Wesson and many more with Infantile Leukemia who can’t be saved by chemotherapy alone will be able to get the treatment they need and deserve.

The bottom photo is of baby Matthew
Sending much love to you all,
Shelsie Ballew

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Mom is having a PET scan right now as I am typing. Remember her last scans showed some spots on her lungs and we are praying the spots are radiation damage. She has been very fatigued and hasn’t looked well these last few days. She has pains in her chest and the skin where her original tumor was has been tight and uncomfortable. She’s had it rough lately and doesn’t need any more bad things going on in her body. Pray she has cancer free scans.

I also would like you to pray hard for the fundraiser I am helping with. I am excited to be helping this wonderful cause and really want to make a great contribution.
Thanks for all your love, support and prayers,
Shelsie Ballew

Or you can turn any the pennies to me.

Last time I posted Kaedyn was having some eating and vomiting issues. Since his last visit to Shands which was almost 2 weeks ago Kaedyn has only thrown up 3 times. Kaedyn is a very intelligent boy so I thought that if I showed him what a feeding tube looks like and described it to him that might encourage him to eat more. Kaedyn decided he did not want one of those and has been eating since. He has gained a pound back and hopefully will gain a little more before we report back to Shands next week. The only thing I am doing different is giving him his anti nausea medicine seconds after he wakes up and exactly 8 hours later. That seems to be helping his little stomach. I told Kaedyn because he has gained weight and has been eating so well we were going to Jacksonville to celebrate. We were going no matter what, but whatever helps him to eat.

I don’t know if I mentioned before but Piper passed about a month ago. She is the 3rd in the last few months to go to Heaven after a long battle with Infantile Leukemia. Another family of a young baby fighting this disease is hosting a fundraiser called Pennies for Phoebe. The hospital where she began treatment is becoming 1 of the 4 hospitals in America and Canada to do the experimental treatment of Natural Killer Cells like St. Jude where Phoebe received her life saving treatment. Phoebe was given a 0% chance of survival and is well over 100 days cancer free. This treatment is supposed to be more effective for chemo resistant cancers. A simple thought to keep in mind, 1/4 children who are diagnosed with cancer die from the disease. They are donating all they earn to Cheo’s Cancer Research for Pediatrics. I want to do the same. For the next month if you can please save your pennies or change and donate it to Children’s Cancer Research. If you want do this for a month you may either get your donations to me or send it to Kaedyn’s PayPal account. I will send every penny to this research project hoping to help find a cure for childhood cancer.

Thanks for all your continued love and prayers.
Shelsie Ballew

Please pray about his stomach issues as he is vomiting every day. We are praying it is nothing serious and is happening due to the increase of oral chemo or so we think. At last weeks appointment on Thursday and Friday we found that Kaedyn lost 2 lbs since last months visit. I knew his weight loss was going to be a problem since he is a little guy. He has had many different medications that may have serious side effects. Things like this would be nothing for a “normal, healthy kid” but not for a “child like Kaedyn.” He could have ulcers in his stomach due to the monthly steroids or a nasty infection in his gut or other issues. The vomiting is usually every morning when he wakes up and maybe once in the afternoon and in the middle of the night. When he throws up in the middle of the night it happens so quick that he doesn’t even wake up. I have to lift him up to keep him from choking on his own vomit. I am so glad we sleep together so I can monitor him and be aware of what is going on. The bad part is my sheets are soaked with vomit almost every day. It is tough waking up every night to give him his medicine and to the middle of the night clean up sessions. This Momma is tired!

Wednesday of this week we went back to Shands for a long IVIG procedure that boosts his immunoglobulins. This is something that is found in the immune system and helps to fight off infections. At this appointment we weighed him to find he lost another pound in just a few days. When we were done with this long appointment his Oncologist walked by and said how is Kaedyn? We really don’t see him very often which is how I like to keep it although I really like Dr. Bill. When we do see him it is typically because something is wrong. We are at a loss as to why he is throwing up. What we do know is it happened after they increased his oral chemotherapy dose 3 months ago. He has been vomiting since then. So it seems like a simple solution to lower his dose, but that is a last resort scenario. Kaedyn has a very aggressive cancer and the more chemo the better. Unfortunately Dr. Bill did say if he continues to throw up and lose weight he will be admitted for observation and further testing. He will be referred to GI to see if there are ulcers or something else disturbing in his tummy. So this means sedation and another procedure and worst of all a yucky hospital stay. I also fear he will need a feeding tube for the first time during his treatment. With only 4 months left of treatment is all of this really going to happen?
Dr. Bill also prescribed Kaedyn an anti acid medicine to see if this helps the situation. Yesterday (Thur) Kaedyn threw up quite a bit and it was very projectile. Last night I had a mental break down. I sobbed because I do want Kaedyn to have any serious issues. He has been through enough already.

Today (Fri) Kaedyn has not thrown up once. He had a wonderful appetite for the first time in weeks. He asked for food and told me I’m hungie. That was so great to hear. So although it is only been one day of not throwing up it is a better day. Please pray for more better days.

Thank you again for your love and support.
Please keep Kaedyn, Mom (NanNan) and all of our little hero warriors in your prayers! And we can never forget our angels and the loved ones of these angels. A special request for Piper’s family since Piper just recently passed and went to Heaven.
Love,
Shelsie

Hello friends and family,

I took a personal day from my work in Orlando to come be with my sister, Kaedyn, and Mama at Shands today. Kaedyn had a spinal tap this morning, yet again. This is such a sad procedure to watch him endure. And it’s so sad to watch my sister suffer emotionally. I’ve written about this before. It breaks my heart every time. He was very brave this morning. He didn’t want to be at the facility, as he recognizes it now when we start walking up. He said, I want to go home. Shelsie reminded him that after he gets his medicine then he’ll go home. The doctor let her go all the way back with him and hold him as he falls asleep from the anesthesia. Then she leaves and comes out crying to mom and I. She reported that he held her tight, squeezing her hard, but never cried. This amazes me about him!  At the beginning of treatment he always cried when getting a spinal tap. Now he just holds on to his mommy tight and falls asleep. When he wakes up from having the chemo sent to his brain, his mommy is right there and scoops him up. He recovered well and doesn’t seem to be in pain today. We do think his C-diff is back so say a prayer that is goes away!! Thanks

My mama (Kaedyn’s NanNan) had a very tough week last week!!  As you know, she has been fighting stage 4 breast cancer. She started having intense pain in the left lung area last week. She went to the ER at Shands because the pain was so awful. The on-call oncologists ran tests, including a CT scan. They found some spots on a lung. We saw her regular oncologist a week ago and she is saying that the spots are either inflammation and/or infection or could be cancer. She has ordered a PET scan in 5 weeks to compare the CT scan from last week. If the spots on the PET show up smaller than on Tuesday’s CT, then we can feel confident that it’s an infection or inflammation that’s clearing up. If the spots on the lung look the same from CT to PET….then her oncologist wants a biopsy of the lung to find out what’s in there. 

 

Sooo…..please, please let’s all pray that the spots are something easy to treat such as infection. My Mama had such harsh chemo treatment last year and continues to take an oral chemo daily. We SOOO don’t want her having to start another round of treatment for cancer in the lungs. Her doc did say she’s leaning toward the spots NOT being cancer, but she’s not sure. Let’s talk to God about this as much as possible over the next 5 weeks. 

 

Btw, in case you didn’t know…..my family HATES cancer so much!!  

 

I haven’t written in awhile. I continue to feel SO incredibly grateful for your support and prayers over the last year and a half.  Take care friends!!!

 

Amber (Kaedyn’s Berber)

This week has been rough. Little Piper is not doing well and they have been told there is nothing more that can be done for her. She has been in ICU for weeks and has been placed on life support. They found the Leukemia cells were up to 30% 5 days ago, the next day it was 79% and then just a few hours later it was 90% leukemia blasts in her marrow. So by now she is probably 100% full of cancer cells. They expect her to pass at any time. I wish a miracle could save her, but it seems unrealistic. Poor little Piper will be the 3rd baby to lose the battle against Infantile Leukemia in 5 months time (the same diagnosis as Kaedyn). Although I remain sad for these other families, I am also fearful for my angel. I want him to survive and live! I want to watch him grow up.

Mom (NanNan) has had a busy week too. She had very intense chest pain which actually led to an ER visit. They set her up with an x-ray and c-scan and unfortunately they found some “concerning” spots on her lungs. We went the next day to speak with her Oncologist. As of now we have no answers as to what the spots are. We do know they feel it is one of the 3 things 1) cancer 2) radiation burns 3)infection. We will have more scans done in a few weeks hopefully to find an answer. Her Oncologist which we love says she doesn’t think the spots are cancerous, but that was not a definite answer. We have all decided to not let fear consume us these next few weeks. We pray that these concerning spots will disappear for the next visit with the Oncologist in 6 weeks.

Thanks for all the love and prayers.
Remember Kaedyn, Piper, Mom and all the other sick children in your prayers.
Love,
Shelsie

A decision was made last month to keep Kaedyn’s port in for six months following treatment due to monthly count checks, and he has to continue getting the IV medicine to prevent pneumonia. It makes sense to access the port in lieu of using another method for these procedures. Mommy feels he has been through enough and using the port makes it easy. There is a plan and a light at the end of the tunnel. We are thankful for all the prayers, love and concern from all of you during this journey. It has been a blessing to our family.

On this beautiful morning I couldn’t help but think about the hymn, “Be With Me, Lord” and the message in it. The first verse says, Be with me Lord, I cannot live without Thee, I dare not try to take one step alone; I cannot bear the loads of life unaided, I need Thy strength to lean myself upon. We need our Lord and what a blessing it is to have His abiding presence and to know and feel He is near as we live our life serving Him.

Have a wonderful day.
Love,
NanNan

NanNan will meet with the oncologist on March 16 to talk about what is next. Pray that future scans reflect no cancer and I beat this nasty disease along with Kaedyn!