The good news is the reason there was a 4 day lag between the beginning of the last posts train of thought and the completion of it was that we went and turned the pile of sticks and stones into a home again even if it was just for 36 hours. Gretchen called me Friday morning to tell me that Liam was found to have already bounced back and his white counts were on the rise meaning he was no longer neutropenic! The bad news was he would need a platelet infusion on Sunday based on their calculations. Going home Saturday morning only to have to come back late Saturday night was going to limit the time Liam would be able to spend at home and I was not happy about this to say the least. I asked Gretchen for the count readings from Monday, Wednesday, and Friday so that I could calculate the rate at which his platelets were dropping. The concern was that by Sunday he would be at 20 or less and it was at this point that he would need them. My calculations proved that he would be at 20 by Saturday morning and he would qualify for an infusion before Sunday and if this was the case we would ensure that Liam had the better part of Saturday and all of Sunday on the ground in NJ with his dogs, bright sunshine, and some good friends who just happened to return on queue. The team at Sloan agreed with the plan and I am happy to report that the gamble worked. Liam was measured at 21 early Saturday morning and they agreed to fill him up so to speak. The drive back to NJ that afternoon was not as pleasant as planned. We had expected a 45 minute blast with no traffic but instead we found ourselves in a construction induced time warp. Two harrowing hours later after enduring Ella’s endless screams for food and Liam’s two very smelly and concerning diaper changes we arrived safely. Upon arrival Liam felt hot and the rather runny diaper changes had us concerned that something was not right. Gretchen held him in the backseat most of the way home. I contemplated how I would explain to a police officer if I was pulled over for speeding that our child was sick and he needed to be held by his mother so this it the reason he was out of his car seat. I wondered what the look on the officer’s face would be and his reaction when I asked what was more dangerous the cancer that he was battling or sitting in the backseat being held by the one who brought him into this world. On one hand I felt like Britney Spears, a rebel and a fool but on the other we were doing what was needed to comfort him and the alternative was Liam getting himself worked up, then throwing up, and then a fever, and then back to the hospital, and surely on a feeding tube because if he didn’t eat this weekend that is what he was going to face very soon. We did what we felt we needed to like it or not. Obviously I feel guilty about it but when I was a kid thee were no such laws and I spent most of my time climbing back and forth from the front seat to the backseat while my mom drove down the road in her massive Delta 88 that by today’s standards likely had a NHTSA crash star rating of negative 4. What we need is a law against childhood cancer…sounds silly yes but we have much stupider laws on the books these days. I was convinced that the reason Liam had a really loose stool was because he had been eating nothing but cheese puffs. Yes cheese puffs but healthy organic ones with a very healthy does of fiber. He had eaten almost a bag a day for the last three days and this fact coupled with a significant intake of apple juice and you get the picture and the reason for my theory. It turned out Liam did not have a temperature but was just overheated from being snuggled up in Gretchen’s arms for part of the ride home. He and Ella had fallen asleep about 10 minutes from home versus 2 hours ago when we left the city as had been our hope and plan….figures. When Liam woke up and realized we were home the smile on his face and the twinkle in his eye made the ride more than worth while. Ella let out one of her high pitched yells as her means of approval. We were home together, the trees were about to bloom, birds were chirping, spring was in the air, and our world was righted again. Liam rode the tractor, played on the swings, went down his slide, played with the dogs, and walked along the stone walls, visited with Grandpa Jack, and hung out with me doing little projects here and there. He had to see every bit of our property as if to be sure that it was as he remembered. I realized just how much he missed it and it made me sad for him. It was when we went to see the fish in our little pond that we had the biggest surprise of all…FROGS!!! Not just 1 frog… but 5 frogs in total. The same number that we had last year so it appears as though they all wintered over in our pond and were back to fill the pond with tadpoles again fro Liam’s amazement. We tried many times to try and catch one but they were just too fast for us. Like I said all was good and only one thing could make this magical weekend better and that was if Liam would eat. Eat he did….just a few hours before we left he decided he wanted chicken tenders and has not stopped eating them. He has had them for breakfast lunch and dinner and last night we witnessed a chicken tender eating marathon where Liam ate 7 pieces dipped in ketchup. He polished off 3qts. of “Magic Juice” ( a really healthy smoothie consisting of blueberries, apples, bananas, oranges, and a few other fruits and nothing but fruits…no added sugars, or water. It has something like a 100% of 10 or so vitamins and minerals and he absolutely loves it. We call it magic juice because he thinks its cool and because it is really magic the way that it fills him up with the stuff he needs to build up his strength and he makes it disappear from his sippie cup like no other beverage we have given him. Magic it is…….
We are looking forward to another weekend at home with Liam this coming weekend surrounded by family, play, dogs, 5 frogs, and nothing but love and hope as we build strength to face next weeks hurdles. I did want to state again in case it was missed or not yet mentioned that Liam is scheduled to have surgery next Wednesday on May 2nd to remove the remainder of the tumor. We have a CAT scan this Wednesday to get a feel for how much the tumor has shrunk and what the surgery will be dealing with. It is going to be a busy few weeks for us. Weeks of great stress and likely the most trying week or two we have had to deal with yet. Liam will undergo what will likely be many hours of surgery and then days in ICU and the step down POOH unit. We will be in the hands of our dear friend Nurse Reese when Liam reaches the step down POOH unit though she has already warned us that Liam will likely hate her and we will wonder why she has to get him up walking so soon after surgery among some of the other less pleasant and painful tasks she will perform. We know though that everything she will do will be to get him better and to help him recover. She has been very caring and supportive of us and we would want none other during what will be very trying days and nights for us all. For all of those praying and sending positive energy it will be needed more than at anytime during this ordeal so far. Tell everyone you know to think of him and to wish him strength next week. Thank you again for all of the support that so many of you have provided and continue to provide. The meals have allowed us to eat and have given us needed energy, the kind words help us go on and reminds us that we are not alone, the prayers bring a greater power to our cause, and the donations and fund raising efforts have touched our hearts and help allow us to provide Liam with the best treatment possible, the selfless act of donating blood provides a needed resource for Liam and other children in his same shoes, and each and everything that anyone of you have done for us has not gone unnoticed or unappreciated even if a thank you card has not been sent. We could not have gotten to this point without the help of so many of you. Like so many people find in cases like this it is the people they most expected to be able to count on who don’t seem to come through for them but it is the people you least expect or don’t even know who really seem to rise to the challenge and exceed every possible expectation with their generosity, selflessness, and angelic acts of kindness. I find that no matter how you may try to get some people to understand what your needs are some just don’t get it. Some make it about them and others just don’t know what to do. It hurts the most when these people end up being family members or very close friends. We thank those angels whose wings have protected us and lifted us and you know exactly who you are. You are the ones who are there for us week after week, who sense what we need, and who attempt to understand our pain and fragile state. We love you.
Larry
