Tuesday, May 1, 2007

My Life as a Mom to a Baby with Cancer

Part II – Chemotherapy

Christmas came and went and while Brandon was healing from his recent liver biopsy, we were still reeling from his Hepatoblastoma diagnosis. Our team of 3 wonderful Oncologists researched and came up with a plan for Brandon using a protocol that was working well with Hepatoblastoma patients in Europe. Our protocol would consist of 4 rounds of Chemotherapy every 21 days to shrink the orange sized tumor, then go in and remove part of his liver (resection) along with the tumor and follow up with 2 final rounds of Chemo to “mop-up” anything that might have been left behind. Then Voila! We would hopefully have a cancer-free baby! The success rate is good – 60%! The scariest part was hearing this is a cancer that does relapse frequently up until the age of 5. But, one step at a time. So let the Chemo commence!

The Chemotherapy drugs Brandon is taking are Doxirubican & Cisplatin. We were given information sheets of all the possible side-effects, some would be more severe than others. Cardiac arrest, heart failure, kidney failure, cerebral hemorrhage, pneumonia, mouth/body sores and hearing loss were just a few. Sobering to say the least! I fought the urge to want to hide Brandon under a blanket and run off in denial that this was really happening. Though knowing this poison holds the potential for a cure, running away was out. Besides! Brandon is heavy and I doubt we would get far running! :)

Much of what I had known of Chemotherapy and Cancer consisted of knowledge gained from television shows such as ER or St. Jude’s commercials. So needless to say, I was not too prepared for what we were about to experience. Brandon’s treatments consisted of a 48 hour infusion, so we were always admitted to Camp Chemo (Medical City Dallas) for 3 days. One of the most difficult factors for us thru Brandon’s illness is that we do not have any family here in Texas. I was a new stay-at-home mom so daycare was out, we literally had nobody to care for Aiden while we were in the hospital. My husband would juggle days off work, we asked neighbors, anybody we trusted if they could watch Aiden for us. It was hard for me to pass Aiden around and not worry about him. Often our family would fly in to care for him for long stretches of hospital time, but there are so many times we never know when we will be hospitalized and those are the times it’s hard to find last-minute help. We now have a few key people we know we can always count on when we have to go in fast, they are a true blessing.

The first day of treatments is always the most challenging. Saying goodbye to Aiden and tucking Brandon in his car-seat, he is always smiling as if we are going somewhere fun all the while I felt like dying inside. At first I always cried in the car on my way to check-in. I couldn’t believe this was reality, I was taking my 10 month old to get Chemo treatments, who does that?! Before going in, I’d wipe the tears and put a smile on my face, we were here to cure my baby, Aiden will grow up with a brother. Upon arrival it’s fast and furious, check-in, vitals, all that fun stuff. Brandon is hydrated via IV for 6 hours before starting any drugs. He then takes a cocktail of anti-nausea meds and usually we get started with the Chemo in the evening after 9pm. The first time he was administered Chemo it was as if I was in a different world. First, there was a large box delivered labeled “TOXIC WASTE! CHEMOTHERAPY INSIDE .“ This sat in the corner like an elephant in the room. The nurse came in wearing a gown, surgical mask, gloves, hair net and all. She carried the Chemo bags carefully and informed me I would have to change Brandon’s diapers with gloves on my hands for the next 48 hours. It could be harmful to my skin if exposed to the waste. Ugh, this is what is coursing thru my son’s veins?! There was one exciting evening when his IV started leaking the drugs. The reaction of the staff was quite intense, and after some scurrying about one of the nurses assured me that it wasn't the "toxic flesh eating kind this time." That always makes you feel so much better. They got his sheets cleaned, mopped the floor, and I gave him and myself a quick bath. I was wondering for a moment if they were going to bring in some kind of team in hazmat gear!

Brandon has always done really well with tolerating the drugs the days he gets them. He has always been the happiest baby, he smiles and plays peek-a-boo, he fiddles with all the wires on him and laughs. But something does change about him, his eyes gloss over, he becomes lethargic and is always the most content rocking on my lap looking at touchy feely books. Every 4 hours around the clock he has his vitals taken. Babies are not fond of blood pressure cuffs, so every means of diversion are used to help get a good reading! The evenings are the hardest, the monitors beep loudly all night, our wonderful nurses - as quiet as they try to be, it’s just not possible to sleep thru all the comings and goings. Brandon also has never liked that big metal crib. I try and sleep as close to him as possible, so he can peer at me, but it’s not the same for him as being cuddled in bed with me and he enjoys ramming his chubby little feet in my ribs. The night is when my mind races, I miss Aiden and pray for Brandon’s healing and all the other children fighting this awful disease.

The anticipation of being discharged on that 3rd day rises within me like a tidal wave. I know that 3 days really isn’t that long, but that stroller is packed and ready to go by the time our Oncologist makes his rounds! I know we will have 4-5 days of Brandon feeling OK after Chemo that I have to take advantage of because by day 6, he is miserable. This is the time frame his counts will drop dramatically and he becomes a target for infections. He becomes inconsolable. His body begins to ache, he develops awful mouth sores that make eating impossible, painful constipation and extreme tiredness. I’m sure there are other issues he has, but he can’t tell me how he feels or what is hurting. He spends those days crying and whimpering on my lap. My heart completely breaks for him. While I try to console Brandon, little Aiden is pulling on my legs wanting to play. I feel split. I want to be the mother both babies deserve and long for the day Brandon no longer has cancer, no pain from the drugs and we can play and go places without worrying about germs and blood counts hospital visits. Little things we used to take for granted are a huge deal to us now. Just being able to go to the park on a nice day is now a most glorious day!

Between treatments sessions we are often in the hospital for blood transfusions or platelet transfusions, these help him when his counts are dangerously low. We also make trips for dehydration when he won’t eat from mouth pain and the worst is the fevers. Fevers are scary in a cancer patient and I am always armed with a thermometer like a madwoman, feeling Brandon’s head and taking his temperature. If he spikes a temp of 101 it’s off to the 6th floor we go. We get to bypass the ER since he can’t be around infectious people during this time. He has always rebounded fast from his hospital visits, he is so strong!

Brandon’s hair began to fall slowly and by March, his hair and eyelashes were gone. Loosing his hair did not bother me so much as loosing his eyelashes, his eyelashes were long and curled, so beautiful! I know all this will grow back, though I can’t imagine him with hair anymore, he is a beautiful bald baby and to me the bald children are the bravest, strongest little warriors I have ever come across. These little bald warriors are what Hero's for Children is all about! I know Brian and I will always be thankful to HFC for helping us! As awful as Cancer has been in our lives, it has also shown us a whole new world of compassionate, caring people and has introduced us to some of the most amazing people we would have most likely never met!

For Brandon the Chemo was working wonderfully, he responded so well to treatments, his AFP (tumor marking score) had gone down from 18,000 at diagnosis to 150 the day of surgery. (normal is under 5). All that was left, was to take that tumor out! It was the day of the big surgery, the day we had been waiting for! Brandon was to have his liver resected and the tumor removed along with a portion of his liver. The liver is an amazing organ – it is the only organ that can regenerate itself, so there would most likely not be any complications with him having ½ his liver removed. An hour ½ into the surgery, one of the surgeons came into the waiting room. He asked me to find my husband and come with him. I knew this could not be good, other people were getting their surgical updates thru a waiting room phone call. I was in tears as I opened a meeting room door and saw all the surgeons and our Oncologist there. I could barely catch my breath as I tearfully choked out if Brandon was ok. It was then we were told the surgery was not going well, his tumor could not safely be removed. Though they knew going into the surgery, this tumor was close to major veins/arteries. Once inside they discovered just how vascular it was and our surgeon, one of the best liver surgeons in the states, solemnly told us he did not feel comfortable and that if he went ahead and tried, he would not be able to get clear margins – meaning he thought cancer cells would be left behind. Brandon would need a full blown Liver Transplant. He would have to continue with the powerful Chemo regimen, until a liver could be found, hopefully, before this aggressive cancer spreads. Currently Brandon is on the transplant list, waiting for his Gift of Life!

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Brandon after his attempted Liver Resection Surgery - Always Smiling!

Coming Soon - Part III: The Winding Road to Organ Transplant


Tracey R. said...

Melissa - thank you so much for sharing this. You did an amazing job giving us a peek into your world. And as someone else who has no family in Texas (and 3 children) my heart goes out to you - I don't know how you do it with Aiden!

Amanda said...

This is so beautifully written. Even though I've followed your story through the FOH board, reading this entry left me with tears in my eyes and a lump in my throat. I continually find myself in amazement at the bravery and strength that families battling cancer have. You are no exception. Please know that each night my 14-month old daughter and I pray for Brandon's healing and for all children battling cancer.

guess said...

This is so beautifully written. It really opened my eyes. Thank you so much for sharing your story. I anxiously check the blog every day to see if Part III is here..

Thank you so much. Best of luck.

MissT said...

Thank you for sharing your story. Best of luck to you and your brave little man. You will be in my prayers.

amanda said...

i want to cry when i see your baby because he is SO cute !!:'(( i hope he is better now(:

Ufak Shan said...

may god bless your child,i cried my heart out after reading ur story,but i believe he is going to be alright very soon,so many prayers are with him,he has to.lots of love to him

laurenbrooke said...

WOW this really touched me. i have heart problems but i have no idea what it is like to wait. i will be praying for you and your family. i hope brandon finds a good liver and the cancer is gone. may god be with yall.