Their Story

Scarlett

Most parents see signs that their child is sick before they get the big diagnosis. This is not how it worked with Scarlett. She was a healthy and happy newborn. We struggled with normal things like sleeping and nursing, but she was growing and seemed fine. Around 6 weeks old, we noticed a small bruise on her forehead. We had no idea how she got it, but expected it to go away. It didn’t.
We went to her 2 month Well Check visit prepared to ask about the mysterious bruise, but not expecting anything unusual. As soon as the doctor saw her, things began getting tense. Another pediatrician was brought in to feel the fontanel on top of her head – it was tight and full. We were sent for a CT scan immediately. By the time we walked back to the doctor’s office, she had already called the emergency room and Lucile Packard Children’s Hospital at Stanford.

Amidst an intense rain storm, Scarlett was transported by ambulance across the Bay to Stanford; we were not allowed to ride with her. We met her at the PICU, only to be pulled aside by a neurosurgeon, who sat us in a tiny room and showed us a picture on his phone: Scarlett had a massive brain tumor, as big as an adult fist, taking up nearly half of her brain. The doctor called it “impressive”; we were in complete shock. As we returned to the bedside with this new information, we were again brought to the little room, but this time by a social worker; the emergency room radiologist, based on the CT images he received and the bruise on her forehead, reported us for child abuse. He had been told already that it was a tumor, but it didn’t matter; he had to fill out his report.

Finally, Scarlett was taken for an MRI. It was only a few hours since her Well Check, and now she was sedated, had two IVs, and had been given steroids for brain swelling. A few days later, a biopsy revealed the tumor was a glioblastoma multiforme, a tumor common among adult males, and seen in some older children, but almost unheard of in newborns. Its size and early detection meant it had certainly begun developing before she was born. The neurosurgeon then proceeded to explain that the outcome for these tumors was not good, treatments would make her miserable, and eventually the tumor would win, so we would be contacted by hospice. We were sent home two days before her first Christmas to wait.

A few days later, we saw the neuro-oncologist. He knew we had been given the worst outlook, but wanted us to get a second opinion from a different surgeon. He made a personal call in the hallway, and we were sent directly with a disc and reports in hand to Children’s Hospital Oakland. Within 5 minutes, the neurosurgeon there said we had to take a chance on her. We had to try.

By New Year’s, Scarlett had been admitted for observation and preparation for surgery. On January 5, 2011, 75% of the tumor was removed. A week later, the surgeon was able to remove the remaining portion. She has been tumor free ever since!

On Valentine’s Day, Scarlett began chemotherapy. She went through 6 months of intense IV chemo, then 6 more months of oral chemo. She lost her hair (even her tiny eyelashes!) and had to have a feeding tube placed. She got a VP shunt, and then a second one when the first got infected. Two months into treatment, the chemo had severely damaged her hearing, so she was fitted with hearing aids. Around 8 months old, her new shunt wasn’t quite right and caused the left side of her skull to cave in. She had blood transfusions, additional surgeries and emergency hydration. She has had 10 surgeries so far, and was in the hospital for more than 100 days before her first birthday. Despite everything, she kept fighting, waking up every morning with a smile.

Now, Scarlett is 18 months old. She is sitting independently, and is very eager to walk . She is still working on eating, but she enjoys animal crackers and dried fruit. She says “mama” when she really wants to. She goes to physical, occupational and speech/language therapy every week. She loves to listen to music, play with her cousin and pet our dog. This Spring, she got to take her first swimming lessons and LOVED it! She is gearing up for more surgery in May to reconstruct her skull. She is happy, loveable baby who brings a smile to everyone she meets.

Keegan

Last April Keegan started having bad ear infections and constant virus. The doctor saw nothing wrong with this, but I (momma) did b/c no baby should be going to the doctor every 10 days for medicine. The last part of April Keegan had tubes put into his ears in hopes it was going to help, but it did not. We still continued going to the doctor all the time. In July Keegan started turning pale and bruising. I continued taking him to the doctor and they keep telling me that he had toddler bruises. But, once again I knew better. He is the baby of 7 and none of our other children had these issues. Well, on July 20, 2011 they did a simple CBC test and called me to tell me that I needed to get him to the hospital ASAP and not the local one but to St Louis b/c this was out of their help. I knew right away something bad was going on. Praise the Lord my parents were in town. (My husband travels so I do not know what I would have done being alone, but God knew I needed someone here.) My mom and I loaded Keegan with a bag for a long day at the ER in St Louis. That is where we got the news that Keegan had High Risk Pre B Acute Lymphoblastic Leukemia. (My 18 month old baby with cancer??? I could NOT wrap my head around it.) They had to immediately start a blood transfusion and platelet transfusion b/c his counts were so low. That was the 1st oh my goodness, b/c getting the IV in him was CRAZY!! The doctor pulled me out to talk to me in the room next door. When she told me it was like I didn't believe her. It was not until I heard her telling my husband on the phone that realty kicked in and I knew this was no dream. We were admitted and started chemo the next day. We spent the first month of treatment in the hospital. It is kind of weird how you no longer have normal but cancer becomes your new normal. Well, not the cancer but the process of the cancer. We were very blessed that Keegan did not have any cell sin his spinal fluid, so he did not have to do radiation. He hit remission at day 28 but still has to finish 3 yrs 3 months of chemotherapy.

This has been a LONG hard journey for everyone in our family. I say often that this is hard on Keegan physically but it is hard on our other children emotionally. Keegan and I spend a lot of time in the hospital b/c his counts are so low and he has nothing to fight off infection. Hard when I have to go drop my kiddos off at a friend’s house b/c we are headed to the hospital. Our 4 yr old really still does not understand.

Today Keegan is still the happiest baby you have ever meet. He has been through so much but keeps a smile on his face. I tell him all the time that he is the strongest person I know. This week while we were in the hospital he got to take his Peach Neet shoes. He was showing them to everyone and pointing out the fact that he has his name on his shoes. Thank you so much for blessing Keegan with a one of a kind unique pair of shoes that are so cute. They tell a story about him when you see the basketball, soccer ball, teddy bear, orange ribbon and the peach. When he out grows them I am going to put them in a shadow box to keep forever. Thank you again!

Liam

Liam is currently an energetic and enthusiastic 7 year old. In June 2010, when he was 5-years old, doctors found a lemon-sized tumor in his brain that was later diagnosed as anaplastic ependymoma, an aggressive cancer. He has endured 3 major surgeries and 33 radiation treatments. His cancer is now in remission and he has had a “clean bill of health” for over year.

Liam has been very fortunate in his recovery. He has maintained all of his faculties and his winning personality. He is aware that there are many children like him who need help along their “cancer journey”. In November 2010, Liam was invited to share his story at the annual fundraiser for Doernbecher Children’s Hospital, the hospital where he was treated. When Liam found out that people would be donating money to help children at “his hospital,” he emptied his piggy bank because he wanted to help too. At the auction, amid donations of tens of thousands of dollars, Liam approached the auctioneer and gave her a little plastic bag with $6 in it because, as he explained, “I am now six years old”. That simple act inspired each member of the audience to match his donation and also give in record amounts. It also inspired the Doernbecher Foundation to create Liam’s $6 Club so that everyone can feel like they can contribute to help children with serious medical conditions. To find out more, go to http://www.Liams6DollarClub.com.

Alaina

On June 23rd, we welcomed our third baby into the family… at 2 and a half, Alaina was about to be promoted from the “Youngest” to “Big Sister”. Alaina couldn’t enjoy the excitement of the day, though. She was running a 107 degree fever. The next day Alaina was diagnosed with Acute Lymphoblastic Leukemia (ALL). This experience overwhelmed our entire family. We were so full of joy welcoming a new child, and so fearful worrying for the life of another. Life turned up-side-down, trading routine, knowing what to expect….for chaos and uncertainty. Family life split in different directions, one parent to stay at the hospital, one off to work, oh, and…what about the other two children? We never thought much about cancer before Alaina was diagnosed. We had healthy children. That’s the kind of thing that “other” people had to deal with. It blindsided us, derailing our entire reality. The entire family was in “fight-or-flight” mode. 9 months later, we are still working on getting a handle on things, but it’s gotten much easier. Here is the story of Alaina’s journey…

Alaina’s treatment, though common among pediatric cancer cases (ALL), was not free from complication. To begin, the day she was diagnosed, her hemoglobin, platelets, everything, were so low they could not give her general anesthesia to put her out in order to draw bone marrow. Instead, they put on some topical numbing cream and our little 2 ½ year old baby girl had to endure a bone marrow draw fully awake. Her daddy was there with her. Though at the time, Alaina still spoke some baby talk that kept people guessing what she was saying, daddy said she screamed at the top of her lungs in pure English “GET ME OUT OF HERE!” Thus began her journey towards getting cured.

Alaina has been diagnosed as “high risk”, meaning a more frequent and intense regimen of chemotherapy lay ahead of her for the next two and a half years. She was in the hospital for almost 3 weeks after diagnoses. The steroids completely changed her. She didn’t talk much anymore. She didn’t walk. She didn’t even want to go into the awesome playroom at the Cook Children’s hospital. She hated the nurses and screamed, kicked, bit, pinched. But honestly, who could blame her what with all the pokes and surgery for her mediport, the weird machines being hooked up to her, and one of her parents not being with her for those first few days (mommy was still in her hospital anxiously awaiting to get released with the new baby to go see her other baby).

When we finally got to go home, July 5th, Alaina had gained 100% of her original weight. Once a little petite 23 pounder, she weighed 50 pounds due to the steroids water-weight and crazy eating. She still would not walk. On top of her being so top heavy with itty bitty legs, she also hurt from one of the chemos which gave her major joint pain. She still didn’t talk or laugh much. We were so worried she was depressed or something, but later realized that those steroids just mess up the way you feel. She was only home for two weeks before we were back in the hospital. Her leg pain had gone from bad to worse. She had an infection in her hip joint which required another surgery to draw the fluid out, and another week stay in the hospital. Between then and the fall of 2011, Alaina had a handful of other hospital stays due to fevers, allergic reactions, and some long treatments. But slowly, she started coming back to herself. Once the steroids were done with, about a month-and-half later, we started seeing our old Alaina again.

Monte

Monte was born with a unilateral cleft lip and palate, with a split in his gum. He has gone through 3 surgeries, two of which were cleft related. He has a long journey still ahead, with somewhere around 13 more estimated. These will be something we will forever treasure, and display, long after he can no longer fit into them. What you do is so beyond words amazing. To take the time that you have to put into each shoe, to bring happiness and joy out of children undergoing lengthy ailments is encouraging, and inspiring. What you do isn't just for the kids though, at least not to me. To me, you've brought me comfort knowing that there is someone who cares enough about my child to take the time and make something just for him and to know that there is someone who believes in him, and is thinking of him along his journey. It's been a long road with Monte. Our community would stare, make comments, and be rude when I would take him out before lip surgery. I felt hurt, and like I had let him down as his mother. To have something like what you do, means more to me than you will ever understand. I wish I would have met you much sooner, but am glad I have had the opportunity to.

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