Makayla's Battle with Cancer
On February 23rd, Diana and Jonathan took Makayla to the doctor’s office after she spent the night throwing up. While they were there, they had a bump looked at from a fall she had earlier in the year. The doctors took an initial scan and discovered it was a tumor, the size of a baseball. A biopsy was performed the next morning.
After a week of tests, Makayla was diagnosed with high-risk, Stage IV Neuroblastoma. It’s devastating news that no parents want to hear, especially in their 16-month-old daughter. It came as a shock since Makayla has never shown any signs of discomfort or pain; she's been a happy child playing, laughing and growing.
Unfortunately, additional tumors were found in her cheek, kidney, spinal cord, and it has spread to 80% of her bone marrow.
Due to the size of the tumor which started near her kidney, she had a nephrostomy put in to drain the urine since it was pressing up against her kidney. A port has been inserted into her chest as well so that she can receive her chemotherapy treatments. Makayla has already received her first round of chemo and the doctors are hoping chemotherapy will shrink the tumors so that no major surgery is needed.
After two weeks at the hospital, Makayla was finally able to go home and see her big brother Jayden. Both Diana and Jonathan are taking periods of unpaid leave for the foreseeable future to take care of their family.
Makayla will have to undergo at least 18 months of chemo and spend more overnights at the hospital. The family has a long road ahead of them and we’re hoping the funds will help alleviate some of the expenses that come with caring for a child with cancer.
Please keep Makayla, Diana, Jonathan, and Jayden in your thoughts.
As of her last scans it showed that she did not have any signs of cancer which means that she has moved on to the maintenance part of the treatment, antibodies. The antibodies are given to help the immune system cells find and destroy the cancer cells. The antibodies at Memorial Sloan Kettering are different from any where else. It consists of a 30 minute infusion once a month, three times a week . It is not an easy infusion, she is surrounded by a team to control her pain and to watch her. We were warned that the infusion is intense, but it is still hard to watch your child go through so much pain and there is nothing you can do but hold her while she goes through it. After the infusion is done, she is still in pain and it may cause a fever. However the good part is she gets to go home after and be with her brothers, which makes her happy as well as her brothers. As Jayden says, "we can be together as a family." The separation was not only hard for Makayla but even more so for Jayden.
With all this treatment it has done some damage to her body. Her urethra is damaged which means she had to have a Nephrostomy tube connected to her again. It is connected to her kidney on the left side. After her treatment is done they will perform surgery on her.
We have watched Makayla grow into a funny, caring, loving little girl. Going to the hospital and getting all this treatment has been part of her life for awhile now. One time she asked why does she have to take so much medicine. We told her it was because she was sick and her response was, "me? I'm not sick." She goes on everyday so strong and we are so proud of her.
We want to continue to thank everyone for all of your support, whether it is asking how Makayla is or your prayers. We appreciate it all as we know Makayla appreciates you all for going along with her on this journey.
She then did one round of chemo last week which lowered her counts and gave her a fever. We are currently in the hospital until her counts come back up. Makayla will be having a full workup including scans, MRI, and a few other procedures at the end of the month. Hopefully the scans will show that she no longer has anymore cancer left in her body and she will be able to continue to the Antibodies treatment. If she is in remission, she will have 5 cycles of Antibodies treatment.
Please pray that all the cancer cells were destroyed and that no new growths are found. Thank you everyone for the continued support.
She was scanned a few weeks ago and unfortunately her results showed that the therapy did not work. The size of her tumor is still the same.
This past week Makayla was put through chemotherapy and antibodies that they used on her previously. She also had surgery to place another mediport into her body because she needs two lines to do this treatment. The treatment caused her a lot of bone pain and fevers. She was on a constant morphine drip to regulate the pain. She is home now and receiving daily shots to boost her ANC count (her body's ability to fight infections) and which also helps the treatment spread through her body. Once she sees the bandaid and gloves she knows its time for the shot. She walks over to the couch and gets ready for the shot. She cries but knows she has to do it. She has come accustomed to all of this treatment and has been so brave through it all. We have watched her grow so much during this past year from a baby into a little girl. We pray that this treatment works. We continue to ask to keep her in your prays and thoughts. Makayla will do another cycle of the chemotherapy and antibodies and will return to CHOP for scans.
For awhile her treatment was working and we thought she was cancer free. We started thinking about her finishing up her treatment and being able to lead a normal life again. Unfortunately, what we feared the most has happened, Makayla's cancer has returned. The MIBG scan picked up active cancer cells in the primary spot near her kidney. It has been a hard week for all of us. We went to the Children's hospital of Philadelphia (CHOP) to get a second opinion on her next steps. They decided that the MIBG radiation therapy would be the best for her. She will be starting the treatment next week. We have entered her into a study and she was selected to do the therapy with chemotherapy. The chemo is supposed to make the radiation stronger. During her time in the therapy she will be infused with radiation for two hours. She will also be taking a oral chemo for about 15 days. While she is doing the MIBG radiation we can not be close to her and she will be in a lead shield. Only one person is allowed in with her at a time. This will be hard because Makayla is used to being close to us. This might even be more difficult for her than the radiation therapy. They will give her a variation of drugs to keep her calm and loopy. She will be in there for a few days because we have to wait for the radiation to leave her body. When she is at a safe level of radiation she will be discharged. From there we will wait for 6-7 weeks until she is scanned again to see the results. We are praying that this therapy will destroy the tumor completely.
Please pray for Makayla. She has been so strong through it all and we pray that she will continue to be strong and keeps bouncing back and smiling. We thank you all for your continued support.
A family friend, 16 at the time had a very very rare form of cancer. He had chemo for two years. He is now 21, in remission and healthy. Please take this story as proof that it can and will work out. Prayers help. Treatment helps. She can beat it. My thoughts and prayers are with you and your family.
Best of luck Makayla! I wish you the best.. =)
Happy Birthday, Makayla! Keep smiling and loving!
Happy Birthday Makayla!!!
Happy 3rd birthday, Makayla! You are an inspiration!
Thank you for the updates. I am a complete stranger, but I'm sending so much prayers and good vibes to you, Makayla You're going to be OK!!!
Makayla keep fighting like you have been doing ...always so good and with that cute smile makes my heart melt. Although I love you and your family with all my heart ..wish we had not met under these circumstances, In my heart always Love Donna (your favorite Nurse !!!) :)
Hang in there. Makayla's story has made me stronger (I am in my fifties). Her brave and continuing struggle reminds me not to bicker about small potatoes, the picture is much bigger. Makayla's family, please take good care of yourself so you can be there for Makayla. I am praying really hard for her. Makayla and her family are fighters.
Happy Birthday Makayla!! Stay strong! =)
My prayers and thoughts are with you!
You have a strong kid there. Thoughts and prayers to your family.
Our prayers are with Makayla and the family !!!! Glad to hear surgery went well!! God Bless beautiful Makayla
My thoughts and prayers are with all of you. I'm sure will make a speedy recovery
To Jonanthan and Diana, I wish the best for ur little princess. For such a young age, she has to go through so much...my heart are with you. Sending u lots of luck and love ur way. Speedy recovery for little brave girl, hope she will go home soon..,will continue praying for her.
Sending healing thoughts your way. Glad to hear the surgery was a success.
She still has a big beautiful smile on... strong girl! Sending my love and support ♥
Thank you for the updates on our dear Makayla!
Jonathan Jan, please add me on Facebook, I would like to discuss something with you in regards to your campaign etc.