Progress....

Hi all. Sorry for the delay between posts. This process moves very slowly and so there typically isn't a lot of change day to day to report on. Its also hard to find the time to sit and type with all the care Brody requires (mostly his continuous eating) along with a newborn. Since I last wrote, Brody has gained nearly 7lbs! I don't know what to make of it. 10 days ago he was skinny and frail and today he's FAT! Its nuts. Around the time of my last post (June 18th) he started eating again with a vengeance. It was as if someone literally flipped a switch. There was nothing gradual about it. He went from 0 to 100 in a day. Dr. Stork asked me how much I'd guess he's eating in a day.... I would describe him to out eat an adult male no problem and I'm not joking. Brody didn't behave this way last treatment phase and I've got a theory about this I'll come back to in a minute.

Some good news... Brody is responding to treatment. This is great progress considering we are only three weeks in to an eight week treatment plan. He received his first four chemo doses within 10 days. his fifth treatment, scheduled for Tuesday the 22nd (day 14) had to be held because his counts had been hammered and needed time to recoup. He got a blood transfusion instead because he had low hemoglobin and we decided we'd try again on Friday, June 25th. Friday was our first sign that things were moving in the right direction. All of his counts had recovered, indicating that his marrow was doing its job. In order to stay on schedule we decided to give him chemo again yesterday, Tuesday, June 29th. We also had a CT scan in the morning to check his sinusitis and more good news... it has cleared. Hopefully this brings some comfort for Brody, one less complication to throw medicine at. Another batch of good news, Brody's counts had gone up again since Friday leading Dr. Stork to believe that the histiocytes were gobbled up and his immune system was functioning properly again. Oh, some more, more good news... we checked his EBV and its undetectable. This was NEVER the case the first time around. This makes perfect sense as Brody no longer sleeps all day like he'd done for weeks and weeks. He had such active EBV, essentially he had mono, that I'm sure it was contributing to his misery. The EBV can be reactivated in immune compromised kiddos so we'll be crossing our fingers it stays away so he doesn't have to deal with it again. Brody's IgG level was low yesterday so he also got a transfusion of Intravenous immune globulin (IVIg)--a blood product administered intravenously, it contains the pooled IgG (immunoglobulin (antibody) G) extracted from the plasma of over one thousand blood donors (read: expensive!). IVIG is given as a plasma protein replacement therapy (IgG) for immune deficient patients who have decreased or abolished antibody production capabilities. In immune deficient patients, IVIG is administered to maintain adequate antibodies levels to prevent infections. Part of the treatment protocol for HLH patients. All of this testing and treatment made for a very long day.

Brody is retaining fluid as a side effect of the steroids. This was not so pronounced last time. He got a little puffy in the face but his body weight stayed relatively the same throughout treatment. He was, however, puffy at the start when he was septic and very sick. The puffiness may have been the steroids but I had always thought it was the inflammation causing it. I dont know. I'm new at all this and I do a lot of guessing and wondering and head scratching. This brings me back to the eating and my theory on the weight gain. Brody was very sick in February when he received this treatment protocol the first go round. He also had a serious set of complications two weeks in with the infected PICC line, the blood clots, the staph infection. Sick kids dont like to eat. Brody didnt eat much the first week and a half of steroid treatment even though the medication was making him crazy hungry. Once he started to feel and act better is when his eating increased. I wonder if some of the things we are noticing and seeing differently this go round are directly related to the fact that he's feeling better and responding sooner. Its my best educated guess. Dr. Stork isn't too concerned so I'll follow her lead on this but I remain very cautious as it weirds me out a great deal. He literally gets bigger before your eyes. A week ago today, when the puffiness started, I took him to the emergency department because his stomach had become so distended in such a short period of time I had no idea what was going on. He's huge. His clothes went from falling off of his skin and bones 10 days ago to not fitting now. He seems miserable. His stomach is super tight and his little arms and legs just get bigger and bigger. Thankfully he tapers steroids again on Friday so lets hope that brings with it some relief. Needless to say, with all the good news I've reported thus far, the puffy, water retaining, eating like a madman, rapid weight gain situation is a lot to handle and deal with. I feel so badly for him, he looks so uncomfortable. All I can think about is how I felt at the end of my pregnancies with my skin stretched to the max and puffy and uncomfortable. This poor little guy, it just doesnt seem fair.

Brody continues to give us little glimmers of himself. He smiles more, he's showing interest in toys for short periods of time and he adds to his vocabulary and communication skills daily. Even with all that is going on, he continues to thrive and develop as a two year old should. This is great as far as I'm concerned.

Although Brody is responding to treatment he is far from out of the woods. We are basically getting him well enough to make him very sick again with the bone marrow transplant. I'm just getting my feet wet with learning about what is to come. It honestly makes me nauseous to think about but I know it is a necessary evil. We met briefly with Dr. Nemecek (the director of the Pediatric Blood and Marrow Transplantation Program) yesterday and found out that they've found 7 likely perfect matches for bone marrow donors through the national registry for Brody. Kaelyn is not a match. We now deal with insurance and getting approval for all the thousands of dollars that will need to be spent testing these individuals and seeing who is Brody's perfect match. We are hopeful that we'll find a strong match out of these seven candidates. There are also several cord bloods that are potential matches as well. We wont know for weeks to come. The tentative plan as of now is to move forward with the transplant in August or September, depending on how quickly we can move through this process and how well Brody responds to treatment throughout the remaining weeks. I'll post on all this separately as I know more. In addition, many of you so graciously have offered to test to see if you can donate to Brody. I will post again with details on how to do this.

As hard as this process is on all of us, I know without a doubt we will get Brody through this and back on track to a healthy, full and productive life. This is going to be a very long journey. Thankfully we've met lots of wonderful doctors who care deeply about saving the lives of kids and who are willing to do anything to help us get Brody through this. Yesterday we met Dr. Michael Recht for the first time in a professional setting. Dr. Recht is actually our neighbor and one of the hemonc docs at Doernbecher! We met him when he first moved in next door, as he took in our little doggie sampson when he wandered off. He came to introduce himself while we were at the hospital yesterday and to let us know we could call on him for anything we needed, being just across the street he's willing to help. I'm now convinced Brody has guardian angels watching over him. To have a pediatric hematologist/oncologist living right next door, how lucky are we?! Its also helpful we live so close to Doernbecher, there seems to be a lot of pediatricians living in this neighborhood as its so close to work :).

I have so much more I know I'd love to write about and share but my little ones only allow me so much blogging time. I will leave you tonight with some of Brody's favorite foods: turkey bacon.. he's obsessed. Thankfully its nitrate free and uncured, making it low in sodium. He doesnt need any more help retaining fluids. Maple bars from beaverton bakery. He learned the word donut pretty quickly once he discovered how tasty these little gems are. His great grandma Dobson would be proud. She too loved maple bars. Bagels. Animal cookies, the yummy frosted kind. Cheese pizza, but only from Pizzacato. He wakes up in the morning and the first word out of his mouth is PITZA! He also drinks this organic apple juice I bought to mix his vitamins and miralax with. He'd never been a big juice drinker before but all of a sudden he goes through this stuff by the gallon. I brush his teeth constantly, I'm a little nervous about all this apple juice consumption. His newest thing is burritos. Kid after my own heart. I love mexican food. He cant seem to get enough food. A week ago I was force feeding him and now I'm withholding. Its a roller coaster ride, a wild and crazy one at that.

I'll be sure to post about BMT testing ASAP for all of you who've expressed an interest.

Love,
Tracy, Jeff, Kade, Brody, Kaelyn