Hi! My name is Niki and I live in a mountain suburb west of Denver, Colorado. I grew up in Colorado, went to x-ray school in Denver and then moved away to Texas for 10 yrs (the last place a Colorado girl thought she would be!!). It must have been fate though, cuz that is where I met my husband, Jeff. we married in 1985 and I convined him to move to Colorado in 1992 after he finished his anesthesia training (it didn't take much to convince him though...he was very happy to come here). We then began to work on our family. After two "false starts" (miscarriages) we were blessed with Eric in Jan 1995. He was and is a very healthy child and he is sooo smart...he's like a sponge...soaking up information in everything he sees and does. At the moment, he is really into football (the Broncos especially!), the solar system, Afridcan wildlife, underwater sea life and a little bit of Pokemon. He loves preschool and already writea a lot on his own, and loves books. He will begin Kindergarten in the fall of 2000.
Since we had difficulting conceiving Eric, we decided to start "trying" for a second child a little earlier than we otherwise might have, in case it took ahile too. Well, wouldn't you know it, I got pregnant very quickly this time!! And 20 mos after Eric was born, came our second son, Brian, in August of 1996.
This is where our roller coaster ride began.
Brian was slow to "transition" after birth. He couldn't nurse well, vomited whatever he DID get into him and had low blood sugar. He was sent to the NICU for IV fluid and observation and they checked his blood count as kind of an afterthough. it turned out tho show a high white count...so they began him on antibiotics and started ruling out all kinds of infections that are sometimes present in newborns after they pass through the birth canal. After 5-7 days, everything had been ruled out. But the NICU docs felt there was something wrong with his blood. They referred us to a hematologist/oncologist. He sat down with us and told us that there was something called a "leukemoid reaction" that mocked some of leukemias symptoms, and that there was a 90% chance that this is what Brian had. He said that there was a 10% chance that it was actually leukemia, but that it was extremely rare to be born with it, so we would watch him over the next 6-8 wks and see how he did. At first, his counts began to get better, but by the time Brian was 4 mos old, the counts began to look worse, and he was presenting as "failure to thrive". He couldn't keep anything down, had to have a special bottle for feeding because he had a very high arched palate that made it difficult to suck, and was only 8 pounds after being born 4 mos earlier at 7 pounds, 6 oz. So, it was time to get aggressive with his nutrition and they put him in the hospital to have a g-tube (feeding tube_ placed in his tummy. At this time, they also did a bone marrow biopsy to find out once and for all, whether he had leukemia. On December 14, 1996, it was confirmed that he did. And not only was it leukemia, but a type of leukemia (JCML- Juvenile Chronic Myelogenous Leukemia) whose only chance for a cure was a bone marrow transplant. They test Eric, Jeff and myself for possible marrow donors, and we were all only 50% (3 our of 6 HLA-type match). So, they began the search for a donor on the National Bone Marrow Registry. Brian also started on a low dose oral chemotherapy to help maintain his counts at a level that was more "normal" til his transplant could be done. Three months later, on March 17, 1997, we were told that a perfect match (6 out of 6 HLA match) had been found!!! The plans were then set in motion to set up and do the transplant. There were several choices of places to do this, and it was decided to go to the University of Nebraska Medical Center in Omaha, Nebraska. They had done several of the same exact types of transplants, and it was a tad closer to home than other choices. Transplants were being done here in Dever at the time, but only related donor transplants, and not unrelated, so we wanted to go somewhere that was approved to do this and had a lot of experience. We couldn't have chosen a bttter place. Aside from having to go through this at all, we couldn't have had a better experience anywhere else.
On June 6, 1997, our 9 mos old Brian had his FIRST transplant. All in all, it went well, but there were many complications...some potentially fatal, but he somehow survived and came hom to Colorado after 3 1/2 mos. One week after returning home, he was back in the hospital here, with RSV (a deadly respiratory infection-especially for anyone whose immune stem is suppressed-and either this or the chemo left him with lung disease that has him on full time oxygen now). He was in the PICU here fighting that and a few other complications for another 2 1/2 mos before he came home. On top of all these complications, we were told that the first transplant didn't work...he still had the leukemia cells and if he survived this first transplant, would need to undergo a second transplant. After 2 years of fighting and recovering and getting stronger, we took Brian back for transplant number two...same donor (what an angel HE is!!), but this time they were going to do a stem cell transplant, a donor leukocyte infusion with a milder preparative regimen of chemotherapy. There was a concern that even as strong as he was since the first transplant, he was not going into this one as healthy as the first. We were a little worried about that, but knew exactly what the outcome would be (no survival at all) if we didn't at least TRY.
The second transplant was June 11, 1999 and went considerably well. He was only there 2 1/2 mos this time because of the lower altitude was able to be off oxygen while we were there! Now, the good news is that he has NO EVIDENCE OF LEUKEMIA CELLS!! The bad news is that he is fighting graft vs host disease...this is where the new graft looks at Brian's body as a foreign body and fights against it - by way of skin irriation and rashes, diarrhea and inability to absorb or digest properly, and an increase in liver enzymes that put his liver at risk too. The treatment for this is steroids, which he was on, but it cuased a HUGE weight gain and has now possibly caused an inability to produce hormones on his own. We are currently working with an endrocrinologist to get through this. Hopefully, it is only temporary.
So many things have happened to him and to all of us as a family since this began. Life has certainly not been what it once was, but we just take it all one day at a time and hope that in the end we have a healthy, happy little boy, and as normal a life as we can have after going through something like this. Brian is and has been the sweetest little boy...he doesn't know what his life should have been like, and perhaps that is good. He is always happy, and rarely fusses. He is behind developmentally from where he should be at this age, but every day continues to make progress. He has begun to "cruise" or walk around holding onto furniture, he says a few words, but is learning some sign language as well. He has begun to drink water from a sippy cup, and he understands A LOT of what is asked or said to him. So, we push on to continue helping him, not knowing what the furutre will hold, but knowking that as hard as this has been for him and us, we are all stronger people than we were before. And the relationships that have formed because of our association with this disease and it's treatment, have forever changed our lives. And if we could sayd that there is any good to come from this horrible illness, it would be that. The love and friendship from those we would have never met otherwise, have enriched our lives incredibly. Thank you to all of you who have made such a difference in our lives.
