Yesterday morning my soul mate, my love, my everything passed away in my arms. I am so grateful for every single moment Byard was in my life. Some people spend their whole lives searching for the kind of love we shared. Though he is gone he will always be in my heart.[...]
A quick update... last Monday, after meeting with Byard's oncologist, we found out his cancer is progressing.. two new very small spots in the brain and cancer is now in the liver. Byard was taken off the oral etoposide and we were in contact with Dr Feldman at Memorial Sloan Kettering in NYC to discuss weather a clinical trial was the next best option and if Byard would be allowed in (with new brain lesions they usually do not). Luckily the Drs allowed Byard into a trial with a drug called brentuximab vedotin. Unfortunately the combo immunotherapy trial is not open but hopefully will be in another month or so. We met with Dr Feldman yesterday to discuss more in detail and get set up to start treatment on Monday. A few patients with refractory germ cell tumors have had a good response to this treatment so we're hoping for the best! [...]
Happy almost-spring! I’m finally posting an update on Byard’s progress. The new type of chemo Byard started in December (epirubicin) initially had a great response, dropping the tumor marker from 50,000 to 8,000, though the second round only got it down to 6,000. Byard showed some some mild heart damage from the chemotherapy (which we knew was a risk) and scans showed cancer continuing to slowly grow in the lungs as well as a new spot in the brain. So, we decided to discontinue the epirubicin. [...]
Can anyone believe it's already the holiday season? When I was little I hated how slowly time passed and my father assured me to try to enjoy life and relax because as you get older it passes so quickly. And here I am holding on to every moment ... there never feels like enough time. Sometimes I find myself pausing to take in deep breaths as if that will slow everything down. If you could pause your day what would you do more of? If there is anything to remind me how fleeting each moment is, it's Baby Byard. He is growing so quickly... one moment he's struggling to move around on the floor and then the next he's almost sitting up. But he also reminds me of how absolutely wonderful life is. Amidst all this pain and fear that we face, we have a shining light brightening our days. [...]
One year ago today the love of my life was diagnosed with testicular cancer. I will never forget that day. I was in complete disbelief and utter shock. The doctors assured us that this cancer is curable but we didn’t realize how serious it was or how hard the road would be. However, when you get cancer it doesn’t matter how good or bad the statistics are… it sucks.[...]
It's been a while since I've updated the post hope... we welcomed Byard IV on May 5th and have been a little busy! Byard 3 started a second round of TIP chemo that ended on May 4th- the day before the baby was born. I stayed with Byard 3 in the hospital and we were both exhausted afterwards because of the chemo schedule keeping us up all night. Byard was feeling exhausted because of the effects of this chemo, which has hit him harder than all the others. When we returned home I went into labor only hours later. We arrived at Pennsylvania Hospital around 6 AM on May 5th and Byard IV was born at 11:50 PM weighing in at 7 lbs. 7 oz. and 21 inches long. Byard 3 was a trooper during the delivery and after, as I know he was feeling sick with lack of sleep and coming right off of chemo the day before. The next morning B4's blood sugar was low so he was admitted into the NICU for a few days. When we finally arrived home with the baby, Byard 3's doctor called to tell him that his magnesium and potassium levels were so low that he needed to go to the hospital to be admitted. What we thought would be only a one night stay ended up being four days so Byard missed the first few nights of the baby being at home. But he returned home feeling 1 million times better and end up getting an extra week before the next round of chemo which was very much needed. He will now be having magnesium infusions at home along with a few more medications, so hopefully there will not be more unexpected hospital stays. Luckily the baby is very easy ... knock on wood! He is really, really good and I'm not feeling nearly as sleep deprived nor as stressed as I expected. [...]
Happy May Everyone!
I cannot believe we’ve finally hit May and B4’s due date, May 7th, is this weekend! Last week my ob was shocked at how low he was sitting (she said she could feel his head!) and I’ve had slight cramping and some off and on back pain but nothing more yet. Tomorrow I have another appointment so it should be interesting to see if we’ve made any progress this past week. [...]
Happy April Everyone!
Good news -and no, it's not an April Fool's joke- Byard is heading home today from the hospital after this (thankfully) uneventful transplant!! This time around he had more mouth/throat sores, but for the most part it was pretty boring. We have follow up appointments in the next two weeks and Byard will have new scans/tests done to see the results from this round. We are praying that the tumors have shrunk even more, tumor markers are down, and doctors will want to do a third and final round. Even though a third round would put his treatment closer to Byard IV's due date, it's better to be as aggressive as we can be. So for now we go home, relax, and enjoy the down time from treatment.. AND enjoy rest and relaxation before Little Byard is born! [...]
It’s almost spring and we are so excited to see it come!
In Philly it was 80 degrees today so we thought we’d visit the Philadelphia Zoo… which honestly kind of kicked our butts (32 weeks pregnant and post bone marrow transplant makes for slow strolling through the zoo in the heat) but it was a beautiful day and it felt good to finally get outside and move![...]