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.
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.
Makayla is currently going through her 12 cycles of radiation. They are radiating the primary spot by her kidney as well as her cheek and head because the tumors are still there eventhough they are MIBG negative (cancer free). They are worried there may be some possible cancer cells lingering that they cannot see. This of course comes with many side effects such as the bones will stop/or slowly grow. The radiation is causing a lot of nausea (vomiting) and headaches. She started radiation the day after Christmas and is planning to be done soon! Every radiation comes with her being put to sleep which means that she has to stop eating and drinking at a certain time. This has been a little challenging since she wakes up to drink water in the middle of the night. She also has to wake up every morning at 6 am because she is the first one of the day and it has been extremely cold. She gets ready with no complaints and waves bye as she leaves. We are counting the days till she is done.
The next step is antibodies again. She has 6 cycles that are supposed to start after radiation. This is going to require stays in the hospital again. This is the longest she has been home since her diagnoses and she is so happy. She is going to have a complete scan and bone marrow aspiration done next week to see her progress. We are praying for good news.
Her journey is still continuing and we appreciate all the continued support as we go through this. Again, no words can describe how grateful we are for all of you. Just your prayers alone mean so much to us. Please continue to keep her in your thoughts and prayers as her scans and several tests are coming up. Thank you from the bottom of our hearts.
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.. =)
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.
Has your doctor suggested using the new baby's cord blood as part of Makayla's treatment? I'll keep you all in my thoughts and prayers.
Please know we are praying for a miracle for Makayla !!!!!!