Car T & Bone Marrow transplant

Here we are six months into treatment... When people who have experienced cancer themselves or with an immediate loved one tell you it is a roller coaster ride they are not kidding. The ups and downs can be so incredibly high one moment and very quickly drop so low into the darkest pit imaginable… those lows seem inescapable at times.

After months of nonstop, phone calls to everyone involved in approving Robbie’s immunotherapy (CAR T cell therapy) we finally received the call we had been waiting for stating everything was approved & finalized. Robbie is tentatively set to be admitted to the hospital again in order to receive this therapy on February 13, 2025. As I write this blog, tears are streaming heavily. They are a mix as our family

Is grateful he was finally approved but fearful of the unknown. As we spend my days watching Robbie fight to make things feel normal again and just to stay comfortable it’s hard to believe the amount of phone calls, begging, and pleading with all parties involved that it took to get what he needed and what he’s entitled to receive in order to save his life. There were many days we felt defeated and felt like giving up. Shaking, screaming, blood pressure skyrocketed, constant headaches, hair falling out like crazy, constantly crying… I feel like I’ve slowly been going insane even though everyone around me tells me my feelings are valid, and these issues are valid. I truly feel on the edge of insanity some days. It is so disheartening and sad to know that some people have to do this alone when fighting cancer in order to get the treatment they need. Ultimately we succeeded… Nothing should be standing in our way at this point. I guess we made a big enough fuss over everything they finally gave in and approved his treatment. It was difficult not to yell at the people we spoke to and would only cause people to hang up. Lot And lots of tears were shed, curse words were used when we were on mute, we filed grievances, we filed a complaint with the department of management healthcare, & did have to use the threat of reaching out to the media. We tried our best to stay calm the best until we would hang up the phone and have meltdowns alone in peace.. Once all of the frustration was out the next call would start and go through the process of breaking down all over again.

Robbie did end up in the hospital a few weeks before Christmas with a common cold. His immune system is very much compromised at this time due to all of the chemotherapy, but with help from the hospital, he was only in for about five days before he was cleared to come home.

Robbies coworkers came together and chose to adopt our family for the holiday. The kindness, the love, the compassion his coworkers have shown him and his family has been unbelievable. It has been a real eye-opener for to see how deeply Robbie has touched so many people, to see how much they care for him, and the impact he’s made as their friend, coworker, and supervisor. We could never thank the cage operations team enough for everything they’ve done for us. It was still very emotional and surreal.

Waiting for February 13th to come has been emotionally difficult for us. The data on this treatment for relapsed B Cell ALL is within the 70% to 90% success rate. There is a small percentage of people who could possibly die from this treatment as well and that brings us a lot of anxiety. Robbie’s cells were extracted and altered in a laboratory and once they are infused back into his body, they will be able to identify the cancer cells and destroy them. Because of this Robbie will not be feeling well and visitation will be very limited. We are trying very diligently to keep him from getting sick at this time in order to not delay this treatment any longer. He will be in the hospital an estimated three weeks as long as everything goes well. I’ve been told the symptoms after treatment are very similar to feeling like you have a bad case of the flu without a cough or stuffy nose. Fever, chills, nausea, joint pain, and more severe/life-threatening, but less common, symptoms can occur as your body is fighting off the cancer cells it can now recognize. We ask that everyone continue to keep us in your thoughts and prayers, especially during that time. To better explain what Car T cell is I am going  to paste information on it below:

“CAR T-cell therapy is a type of cancer immunotherapy where a patient's own T cells (white blood cells) are genetically engineered in a lab to recognize and attack cancer cells by adding a special receptor called a chimeric antigen receptor (CAR), allowing them to specifically target and kill cancer cells when reinfused into the patient; it's primarily used to treat certain blood cancers like leukemia and lymphoma.”

I would like to thank everyone who reached out about the struggles I was facing getting Robbie’s treatment approved. We were touched by everyone who tried to help. My mind was so scrambled during that time it felt like I was screaming for help. I could not focus daily. Nausea, blurry vision, headaches all of the above were difficult to manage day by day. We followed everything everyone sent the best we could. With all of your help we were able to get Robbie’s treatment approved and I thank all of you for caring enough to do research, reach out to family members and friends who had experience in the medical field and with insurance, and asking them to reach out to me during that time.

Thank you, to everyone checking up on Robbie. I know everyone understands that he is going through a lot physically, mentally, and emotionally during this time and it can be difficult for him to reach back out or to update on things regarding his treatment. Going from living a “normal” life with your family to being at the doctors sometimes every day of the week and going through…. I hate to put it this way, but the torture of treatment is a lot to endure and it can be difficult for him and us to talk about most days. That is why my family created this blog for us to update and express the difficulties we’ve been facing in order to create some sort of outlet for the intense anxiety and stress that comes with managing leukemia for Robbie and our family. Robbie just tries really hard not to even think about it as much as he can which is very difficult when your mortality is at the forefront of your thoughts constantly.

We celebrated Robbie’s 35th birthday on January 15th. Unfortunately, he received chemo interthecal through his spine the day before, and then through an IV the day of his birthday. He wasn’t feeling his best, but we made the most of it and it with our family.

To wrap this up for now until the next blog, if anyone would like to help Robbie, I would very much encourage anyone who is willing and physically able to join the national bone marrow registry today.

https://www.nmdp.org/get-involved/join-the-registry

You, I hope that anyone would possibly consider joining even if you were unable to be a match for Robbie. It’s been very emotional for us to talk about these struggles with parents who are going through the same, but with infants and children as young as our son who is two years old. To imagine a child having to endure what Robbie has had to really urges us to encourage others to donate not just for Robbie, but for the many people struggling like our family but don’t have any sort of support system.

If you would like to join the registry and be tested to see if your bone marrow is compatible for Robbie or another recipient this is the link:

https://www.nmdp.org/get-involved/join-the-registry

If you would like to donate to our GoFundMe or share it with others this is the link:

https://gofund.me/79e2d35d

I would like to thank everyone who donated. Everything helps us so much and all of your donations have gotten us so far in helping with Robbie‘s endless co-pays, medications, and medical expenses. You guys have kept us afloat all this time and again I could never thank you enough for your help.

I would like to thank my cousin Danielle who hosted “Mini’s for a cause”. She has her own photography business/studio located in Yucaipa called Dani Mejia photography. She donated all of the proceeds she made doing a full day of mini sessions. She also created this blog for us when Robbie was and continues to help review and manage for us.

Please do not underestimate the power of prayer, the messages of love and support, & thinking about us.

https://my.bethematch.org/s/join