Wednesday Night March 29th Update

Too tired physically and emotionally to write, but lots of amazing stories to tell. Liam will likely be back in the hospital in the next 24 – 72 hours until his blood counts come up. It could be a few days or a few weeks. He's at 0 white blood cells but still going. (You'd never know if you saw him.) I'll leave you with this image – Liam dancing to "Man I feel like a Woman," as it was performed by a group from a local high school. (He was the only child in the audience bold enough to go up to the front to dance.) He quickly moved from dancing to insisting on playing the drums which were infinitely more interesting to him. And another quick snippet…Liam telling me "I'm OK Mommy – stickies are all gone" to avoid a dressing change. Dressings, the protective layer of gauze and bandages covering the central line in his chest, need to be changed every Monday, Wednesday and Friday. He HATES to have his dressings changed and it takes three people to assist the process. I hate dressing changes…maybe even more so than Liam. He'll forget them and eventually will have no memory of this experience. I, on the other hand, will never forget the sights, the smells and certainly not the sounds.

Gretchen

Monday March 26th 1:17 a.m.

I’m so not looking forward to this week and next…and possibly the next few after. We’re now in the weeks where Liam’s white blood cell counts will drop and the battle of staving off the host of viruses, bacteria and germs that are waiting in invade his body begins. In fact, I dread this week..so much so that I can’t eat. And in the wee hours of the morning, I’m alone in my fears. I would be lying if I didn’t say that I’m terrified, but I’m trying to gear myself up for the ensuing battle. Cross-contamination is a huge way of introducing germs to Liam. And one of the best ways to combat is as simple as washing your hands…a lot. I’ve washed mine so much that the skin is flaking and peeling. I can’t put lotion on my hands without wincing in pain – they’re that tender – but dammit, I’m not going to allow my nurturing hands to be a pathway for germs to get to Liam. When I’m out in public, I want to run in fear when I hear someone sneeze. When I get ready to get on an elevator, I want to cry out to everyone…”if anyone is sick or has been near anyone who is sick, please let me know.” I want to put a sign over Liam’s head that says – “I’m fighting cancer. Please keep your germs to yourself.” And I find myself looking at someone with alarm if I hear them sniffling and scanning faces for runny noses.

Sunday March 25th Update

It’s Sunday night. Tomorrow marks four weeks since I took Liam to the pediatrician to get reassurance that my son’s 10 days of excessive sleepiness and lack of appetite was “nothing,” only that wasn’t the news I heard. Instead, I heard that the pediatrician wanted to send Liam for a blood test, chest X-ray and abdominal ultrasound. The pediatrician didn’t tell me to immediately go to the hospital to have the tests done, yet that’s what I did. The minute I left the pediatrician’s office with three prescriptions in hand for three tests that would reveal the silent invader that was trying to take over my son’s body, I just knew that something was wrong. I don’t know why, but I just knew. When I arrived at the hospital, I was told that Liam could get two of the three tests, but the most important one, the ultrasound, would have to be scheduled for another day. The details are too painful for me to relive right now, especially knowing that I’m heading into some very tough weeks, but I managed to get the ultrasound that evening…after a several hour wait..all while trying to entertain Liam and make him comfortable with the situation. After two pregnancies, I’m used to the rhythm of a normal ultrasound. I know when things are going along smoothly, and when they’re not. I knew when the technician was taking too many measurements that there was something wrong. I knew when she wouldn’t answer me with a straight answer that there was something wrong. I knew when she told me she was going to do me a favor and get the radiologist to read the scan immediately instead of making me wait until the next day for a reading, that there was something wrong. I knew. But I had no idea what it would be like to receive the news that I did. And I didn’t know what it would be like to keep receiving bad news after bad news for a week. I don’t like to relive the week of diagnosis. It’s just too painful and thinking about it doesn’t help anyone or anything. I suppose I’m thinking about it now because I’m wondering what other people do in this type of situation. Would they wait and have the tests done by following proper procedure and scheduling appointments during business hours? I feel like I failed my son because I didn’t realize sooner that there was something wrong. If I had taken him to the doctor on Tuesday, the day I first called to ask if he was going through a growth spurt that would cause excessive sleepiness, would it have made a difference? OK – I know it wouldn’t have…but there are times….like right now when I’m vulnerable because I’m thinking about the tough weeks ahead…that I let my mind wander. But then I look at Liam who had the most amazing weekend with lots of love and laughter and RUNNING…yes…RUNNING from one end of his new home to the other….that I have the strength to push those fears aside and get ready to wash my hands. Wait – he’s 2 ½…and I’m using him for strength? That’s what’s amazing about my son…he’s the one who gives me the strength to fight like I’ve never fought before. If only you could spend the day with him, I think you’d be totally amazed at him. The first week Liam was diagnosed, a necklace appeared as a gift. The necklace is made of beads and has three pendants hanging from it. Each pendant has a word engraved. One says, “Imagine.” One says, “Believe.” The third says, “Peace.” When I first saw the necklace I almost threw it away because the words made me sick. But now I can wear the necklace because I truly do feel all of the things those pendants quietly but resolutely declare. And when I’m having a down moment, I grab those pendants and rub them to feel the engraved letters under my fingers.

Friday March 23rd 4:15 PM

UPDATE Friday 4:15 PM
I just received a call from our broker and the apt is ready for us! All we need to do is arrange to get the key. Both brokers worked diligently with the property owner and the building manager to expedite the approval process and managed to do so in 5 days versus the 2 weeks it normally takes and for that we are most grateful. Now comes the hard part, deciding what we need in NYC versus in our home in NJ and getting it there. It is easy actually all we need is Ella! We all miss her so much. The family will now be together in one place.

Friday March 23rd 4:00 PM

We have just been released from the day hospital completing round 2 of chemo. Liam is doing very well and we now have about a week before he becomes Neutropenic and his white blood counts drop. Our nurse the last two days was Emily and she was fantastic. She was compassionate and gentle and she made the short stay in isolation a much better experience than we had imagined it would be. We have had two different nurse Emily’s this week and if they are any indication of the kind f care we can expect from nurses named Emily then all of Liam’s nurses going forward can and should be named Emily. We need to be back to the day hospital Monday morning to see how he is doing and to draw blood for cultures.

Friday March 23rd 11:00 AM

UPDATE Friday 11:00 AM Liam has been nothing but friendly and cordial to almost all who have cared for, inspected, probed, and prodded him but today he made it clear to us both who the one person aside from us that he truly has affection for and this lucky person is Terres. She is the Director of the “Child Life” program and two different times today after seeing her in the distance, Liam has pulled us and his IV pole directly to her with a giant smile on his face. He reaches out for her and she drops whatever she is doing to bend down and take his hands. He literally laid his head in her hands today as if her touch makes everything seem a little less scary.

It broke my heart to see him so desperate for a safe haven aside from us. It is just this kind of bond that we want him to forge with nurses, doctors, and those who will be caring for him. It is part of my motivation to not split his treatment between hospitals regardless of the cost of not being considered in-network at MSKCC. A child needs to feel safe and the majority of the people (not all) we have interacted with know this to be true and go above and beyond to take the child’s feelings and fears into consideration. The few that don’t, stick out like a sore thumb and you wonder how they survive for any period of time in a place that is so committed to children.

Friday March 23rd 10:00 AM

The close of another week and another weeks worth of new experiences, fears, doctors, nurses, sounds, smells, and everything that comes along with this world we have been thrust into. I have not posted for about a week for I have not been able to put into words what I have been feeling. The reality is I think I have been literally numb this past week. All of the emotional stress, fear, and energy it took to get through the first three weeks of Liam’s treatment had taken its toll on my ability to feel. One feeling has not been able to be controlled, buried, or ignored and that feeling is pain and the feeling of being helpless. I hurt for my son and for all he is going through and I cannot make it stop.

Blog entries seem to force me to face this pain and though I am sure it is a good thing I have not had the strength this last week to endure it. While standing in the kitchen last night cleaning up the sink I was overwhelmed with the feeling of pain. When it hits me I feel as if the wind has been just sucked out of my lungs and no matter how deep a breath I try and take, I cannot seem to overcome the feeling of being held underwater against my will. I proceeded to kiss Gretchen goodnight as she lay next to Liam who was sleeping peacefully, as if there was nothing wrong in his world. I leaned down to kiss him on the head. The feeling of the soft down like hairs left on his head brush against my lips and the remaining air in my lungs is converted to tears. I cannot take my lips away from his skin. I beg for the disease to leave his body and come into mine each time I make the magical connection of my lips to his precious little head. I have always had a very high tolerance for pain as is evidenced by the sports I have played but nothing can prepare you for the emotional pain you feel when your child is truly hurting, scared, and in danger.

Gretchen and Liam came to the hospital and I stayed behind to clean up the apt, fold laundry, and to get some things ready to go back to NJ to see Ella this weekend. I headed over about an hour after them. I ran into one of the doormen as I left the building and he approached me and asked if it was my son that was in the hospital. I told him it was and that he was doing well. He told me he used to volunteer but it was just too hard for him being that he had kids. He explained that he had to see a psychiatrist because it affected him so deeply. He told me that if there was anything, ANYTHING, he could do for us not to hesitate in asking him.

I continued down the block and about half way to 2nd ave. the “feeling” began to overwhelm me again…. I was drowning and ever so quickly..sinking like a rock. I tried to look at building, cars, anything to try and take my mind off of the pain that had enveloped me so unexpectedly. Maybe it was seeing parents with their perfectly healthy children heading to day care, or the doorman who somehow knew I was the one with the sick little boy. Whatever it was it came without warning. Tears welled up in my eyes and it took every bit of strength that I had to carry the weight that had just fallen on me and to hold back the tears that wanted to fall like the rain that was gently coming down. I dared not look anyone in the eye for fear that they could see it….the pain, fear, and tears. I pushed on and the feeling subsided as I channeled my strength to push down the pain and fear. I think I now know what it feels like for people who suffer from anxiety in their daily lives.