What a difference a year makes! Today is one year from when Julian was diagnosed with cancer. We have had ups and downs, happiness and sadness and witnessed more than one miracle. This is Julian ’s (and our) story over the last year.
Julian was diagnosed with ALL Leukemia and although this is a common childhood cancer, his age (normally affects kids around 6-10) and his unusually high white blood cell count of almost one million is what made his case so rare. Because only UC Davis Medical Center could treat Julian at this stage, Julian was immediately transferred from Kaiser in Roseville ian ’s white blood cell count was so high that he underwent aphaeresis 4 times in 24 hours at UC Davis, which even surprised the aphaeresis technician . After the fourth treatment, there was not much of a change from the previous treatment where his count had stayed at 150,000 white blood cells. This was because his body was making cancer cells too fast and was replacing the white blood cells that we removed with new ones just as quickly as the treatments were. We decided to start chemotherapy. That was October 25, 2010. The first 24 hours after the first doses of chemotherapy would be crucial. His organs were already under so much stress from the high amount of cancerous cells in his blood and now they would have to filter out the ones the chemotherapy had killed. His white blood cell count was still higher than what they wanted but his body was making cancer cells too fast to go any lower. His organs would be monitored very closely during the first 24 hours in case anything would happen they would try to assist his organs if need be. It was out of our hands. This would be our second miracle. He came through this and started waking up! He had been mostly unconscious since we arrived at UC Davis.
Paolo is Julian's number #1 doctor at UC Davis!
While at UC Davis Julian also received a broviac (which Julian now calls his “tubes”). This is a tube that comes out of his chest that we would be able to use to give chemotherapy, take blood samples and administer blood and platelet transfusions. Once he was stable, we were transferred back to Kaiser in Roseville
When we were discharged from the hospital we were taught how to care for Julian ’s broviac and administer medicine. His broviac needed to be cleaned and also flushed daily
We moved into the Consolidation phase, which was a big step in treatment. This meant that Julian had reached “remission” because after the first round of chemotherapy there were no detectable cancer cells being made at the end of the first phase! One, of many, milestones we would reach! Once his body had stopped making the cancer cells we were able to move into the consolidation phase. The consolidation phase was 78 days from November 29th, 2010 until February 1st, 2011. He received Intrathecal Cytarabine (spinal treatment), Vincristine (IV push), Prednisone (pill), Daunorubicin (IV), PEG Asparaginase (shot), Intrathecal Methotrexate (spinal treatment). After February 1st Julian ’s treatment was placed in a holding pattern until his body was ready to continue. Julian required an ANC of 750 in order to go on. The ANC is a calculation taken from his blood sample that measures his ability to fight infection. We waited and waited and waited some more! This was a very critical time for his health at this point. Julian had been receiving so much Chemotherapy that his body took a long time to bounce back. There were many times he had absolutely no immune system. So with it being the cold and flu season, and with his older brother in preschool, I cleaned obsessively and we were in serious lockdown mode at the house. We survived this stage with no hospital stays! Well worth the constant cleaning; especially while trying to keep life “normal” for Julian ’s brother Paolo.
Next came the Interim Maintenance phase. It was a 57 day course of treatment that required periodic week long hospital stays to administer a high dose of methotrexate. It began March 7, 2011 and ended May 1, 2011. We would be in the hospital for a week and out for a week for a total of four hospital stays (or eight weeks). He would also receive Leucovorin (IV), Vincristine (IV push), Mercatopurine (6MP-pill) and Intrathecal Methotrexate (spinal treatment). This phase and the Induction phase were the hardest on the family because one of us was always with Julian in the hospital and then the other would be at home with Paolo juggling to keep the house filled with food and cleaned. Although I will admit NOT as clean as when Julian was at home! J I try to take advantage of the breaks when I get them!
Then on May 2nd we started the Delayed Intensification phase. This was a 64 day phase that ended July 4th, 2011. He received Vincristine (IV push), Dexamethason (pill), Doxorubiein (IV push), PEG Asparaginase (switched to an IV form), Intrathecal Methotrexate (spinal treatment), Nelarabine (IV), Cyclophosphamide (IV) and Cytarabine (IV push) and Thioguanine (pill). This is a combination of the Induction phase and the Consolidation phase along with a few new drugs. He got hit hard in the beginning and received a lot of chemotherapy at the end again which resulted in a low immune system and required even more obsessive cleaning for me and strict lockdown on the house! We were admitted on July 1st, 2011 because he had a low grade fever of 100.5 which is an automatic hospital admission to check for infection and bacteria. With no immune system and the broviac site a huge risk for infection they have a short window of time to catch any infection before he would become septic and affect his organs. Julian also wasn’t acting like the usual happy boy that he always is. We had been at the clinic the day before and he was not acting like himself. Of course, once we were admitted his temperature was 98.6 but we were stuck there for 48 hours. He was a nurse’s dream patient! He had no IV’s and no special care. We sat and we waited and played trains. As the 4th of July came around we were hoping he would get discharged. He needed to improve before we could be discharged. His immune system was compromised completely. His ANC went up .01 and that was the “momentum” the Doctors needed to discharge us! Gabe and I were very proud when the Doctors told us that usually they would not discharge a patient in Julian ’s state, but that they trusted us to monitor and react to any changes in Julian .
Finally we started the Maintenance phase which lasts about 2 years and where we are today. This is where we learned that technically the maintenance phase started in February! So we were already a few months into it! This last phase is the longest and broken into two more phases. The first part started July 18th, 2011. It is broken into three month cycles and we repeat it three times. It is approximately 9 months long as long as there are no set backs as we move through it. In this phase he receives Vincristine (IV push), Prednisone (pill), Mercatopurine (pill), Methotrexate (pill), Intrathecal Methotrexate (spinal treatment) and Nelarabine (IV). So far into this phase, his ANC has been from the 200’s to 2600. This is common as his body adjusts to coming off of all the higher doses of chemotherapy he has been taking. His bone marrow is learning to make everything on it’s own without being suppressed and it will take time to even that out. We are slowly learning to take advantage of his high numbers and rejoin the real world. We have gone from checking his blood 2-3 times a week to just once a month. Knowing what his numbers at any given moment, is harder to do but we have so much trust, faith and reassurance from his team of doctors. They all agree that Julian is responding amazingly well and we have to take that gift and learn to start living with it. Hopefully this spring his broviac will come out. This will be a HUGE step because there will be less of a chance of an infection or risk of something happening to his “tubes”. (Let’s face it. He’s three and things happen!) Once the broviac is removed he will be able to go to preschool and really start living a normal life. This will be a happy day for us and Julian who is dying to go to school like his brother!
Overall we know that through this most difficult time or our lives we are truly blessed. We have had continuous support from family, friends, my mother’s group, the preschool and let’s face it…facebook for venting my ups and downs! We had the resources to literally transform our house to a germ free bubble and everyone in our lives respected our neurotic rules. With all of our support we were also able to have either Gabe or I, be with Julian in the hospital and the other available to care for Paolo so neither of them was ever alone. We also had our Aunt Lynn Esparza who helped calm us and give us information during the tough times. Lynn Esparza is a nurse practitioner in Oakland ian gets better, can we…..”. Julian is the strongest hero of us all! He never minded the long hospital stays and being poked and prodded CONSTANTLY and having to fast before procedures. He actually has a strong interest in what the doctors do and jumps at the chance to listen to his (or anyone else’s heart) and look in people’s ears. On each Doctor’s visit after the Doctor does his initial check-up, Julian says its his turn and then checks the doctor for his vital signs!
Jul
This fight began with his will to live and our fight to win. In the beginning it was out of our hands Julian showed us miracle after miracle. He was only 2 when he was diagnosed and really doesn’t know any other way to live, but he lives every day. He has taught us so much over this last year and I can not even begin to imagine what he will teach us as he grows into a young man and see what he will do with his life that he fought so hard for. I know every parent thinks their kid’s are the greatest and the best but mine really are! J I’ve seen them struggle at some of the hardest times that most people won’t ever have to experience and I see the happy, strong, normal and well balanced kids that they are, after having gone through this last year. People tell Gabe and I, that it is because of us that we have all done so well but we always say we just did what any parent who loves their kids would do. We did what we had to and seeing them healthy now makes all the sacrifices and hard work we did seem so minimal.
Our journey will continue for a few more years but we will enjoy the time that we are given now and live in the moment for that is all that we have today!
