Much has transpired since we last updated everyone who follows our journey. Many of you get your updates on Liam via Gretchen's Facebook page, which often provides real time information, but others I know still look to this blog as their source of all things Liam and why I am posting here today. The last few months have been the hardest part of this journey so far. Each time we take a step forward we lose any ground gained and then some just a few weeks later. Liam's cancer has been relentless and none of the therapies he has had over the last few months have held him for more than a few weeks. Since his surgery last summer we have been in the throws of this battle nearly full time. Liam has endured numerous rounds of toxic chemo, damaging radiation, and painful antibodies in just the past couple of months. Each has beaten his cancer back but only for a few weeks at which time scans show it spreading to a new spot or growing back where it was just removed or killed. Up until a few weeks ago we felt we were possibly making headway as scans showed some disease but nothing significant and the decision was made to use antibodies to help his body fight the remaining residual disease. Unfortunately after 2 rounds of antibodies a random x-ray showed a suspicious spot on his right lung. The CT scan that followed showed what appears to be disease in his right lung as well as on his right kidney... again.
This news came just 48 hours before Christmas. And with it the question of did we want to continue to fight. This was a question that required no time to discuss or to think through. The answer was we will fight..start therapy next week. Liam would never quit and we will not quit while there remains hope in our hearts and a smile on his face. His love, passion, joy, touch, insight, and warmth are worth every bit of hope and fight there is to muster and not just from us but all of you. So the holiday we hoped would be filled with joy and renewed hope instead left us searching for the strength to make it through and appear as if all was right in our world for Liam and Ella's sake. The needed break in the country was then cut short because we needed to be back in NY to start chemo just a day after the magical morning of Christmas.
Liam finished the round of high dose chemo nearly 2 weeks ago and has been neutrapenic (no immune system) for nearly 10 days now. The chemo pretty much wiped him out and he has barely eaten, played, or been remotely himself, until last night when he seemed to perk up a bit. As if the neutrapenia and fear of being admitted were not enough, last Thursday we found blood in Liam's urine and it has been persistent since. The cause is unknown and could be due to a virus in his bladder called BK virus, which is spread through transfusions and typically only effects those with compromised immune systems. Liam has had countless transfusions so we all hope that this is the cause since it can be treated with a full month of antibiotics. The test takes 6 days and we should know in just a few days if this is the cause. The other possible causes could be the chemo he received 2 weeks ago or the right kidney due to the tumor that is attached to it. If the tumor and kidney the hope is that it is due to the chemo causing the tumor damage. Liam had an MRI yesterday to get a better picture of his kidney and we hope to hear about the results today or tomorrow.
So as you can see we have been through a bit of hell the last few months and are doing all we can to keep pushing ahead and to keep Liam engaged and fighting. Spending nearly most of each day and week at the hospital has taken its toll on Liam, Gretchen, and our family as a whole. Liam needs your hope and prayers more than ever before. Gretchen and I continue to dig deep to find hope, strength, and courage. We will fight with everything we have as we have done from day one. Liam continues to accept whatever comes at him each and every day like the brave prince he is. His days are filled with very little fun and yet he takes it all in stride and does as he needs to with very little fuss. I hear more complaining from adults about the weather, their jobs, their co-workers, family members, and acquaintances in the course of a week than I have heard from Liam in 4 full years. His almost daily display of bravery, strength, and perseverance is really unbelievable when you think about the fact that he is just a 6 year old little boy. He continues to inspire us and to shape the way we view the world and the people around us.
I also want to take a second to thank those who support our efforts to help bring needed change to the world of pediatric cancer by supporting our Cookies for Kids' Cancer Foundation. A special thanks to The Glad Company for taking a public stand against pediatric cancer. No other national brand has created awareness for pediatric cancer in such a meaningful way. Thank you to the thousands of people who held and supported Cookies for Kids'Cancer Bake Sales last year. Cookies will announce grants of half a million dollars to 5 of the top pediatric cancer centers in the country in the coming weeks and it would not be possible without the efforts of so many. Lastly a special thank you to our dear friend Emily for all you do to keep Cookies growing.
Thank You.
Posted by LWitt
