Wednesday, October 7, 2009

The First Night

While I wish this night was more of a blur, I am exceedingly grateful Sam remembers very little about it. Sam and I traveled to Children's Hospital at Montefiore (CHAM) by ambulance. We tried to make a big deal of the thrill of this mode of transportation and Sam really seemed to like it. He was even more pleased to discover Jack had not been in an ambulance before (score 1 for Sam)!

Upon entering the ER, I was struck by how dark and scary it looked. Here we were in the basement of a strange hospital in the Bronx, miles from home, waiting for a bed to save our son's life! Brian still had to drive down and meet us. There was a baby who had fallen down and was having so much trouble...I do remember thinking how much I hoped she would be okay.

Finally we were told to make our way to the PCCU - what??!! That meant critical care...the older kid version of the NICU!!!! We were done with that with Jack..surely? Now my heart sank yet again.

Nicole was an angel. She saw us in the ER hallway and immediately took charge. She was a member of the Child Life team in the ER but felt we needed her more that moment so she adopted us and took us to CHAM 10 -top floor-place for very sick kids! How clearly I remember Nicole talking me though the initial procedure and how she could help. She would explain things to Sam in a way he would understand and be there to advocate for us. For the second time that day, I realized we were very lucky. She just happened to be there as we walked by.

A million doctors and nurses tapped into Sam's arms and drew blood, checked vitals, hooked him to monitors, and created a symphony of electronic beeping sounds. This later became a concerto as Sam's screams took center stage.

Kindness was around us, care and reassurance. They had handled this many times and knew the procedures. We were struggling to wake up from the nightmare, but trying to stay focused on all we were being told.

Then came the worst. This part will haunt me forever...but remember, Sam does not know it happened. In order for the drugs to be administered safely, Sam need a port through a main artery. The Xrays were back and we were told there was a strange mass in his chest...he could not be put to sleep for the procedure as it was too dangerous. So they numbed the right side of his groin and 6 doctors and nurses attempted the impossible...getting a needle the side of a cigar into his vein so they could insert a tube the length of my middle finger. Brian and I were asked to help sooth him...we became the ones who held him down as he screamed. All I could say was "relax, if you stay calm it won't huts so much." "Breath Sammy, I love you."

The doctors could not fit the line. The 'happy juice' designed to leave Sam disoriented and not as aware had been administered at full safe dose..yet he still knew all that was happening. Seven tries later they went to the other leg. This had not been numbed. Brian and I pinned him down and whispered words of love to the child we were torturing. I could not have inflicted that much pain on my worst enemy...yet I kept smiling down at my child. My smiles did not extend to the doctors!

Eventually the line was in...we were a mess and the doctors were also in shock. They had never experienced that before. Yet still there was such kindness. The Fellow on the ER went out to get Sam something he would like to eat. The burger King she had in mind was closed, so she drove 13 miles to the nearest open KFC and brought him back some chicken. My little fighter was asleep and never did eat it, but again, we saw how people were there for us. People can be so kind. Best of all, sam does not remember the whole thing. He still asks how he got the marks and bruises (still there from a month ago) but he will never know about that night...again, we are so lucky.

Tuesday, October 6, 2009

It's Leukemia!

September 13th, 2009 started out strangely. Sam, my 5 year old son, had been upset all night and was now hitting his fist against the couch in pain and frustration. The past couple of weeks had been spent visiting doctors for a variety of reasons, including the possibility that he had heart problems.

Sam had been complaining of headaches for several months but they were generally infrequent. Recently, he had been troubled by a pain in his chest..he said it felt like his heart was 'pushing him". This led to my first visit to the local doctor who agreed to do a EKG but thought there was nothing to worry about.

The results came back as abnormal! I was terrified as the doctor said it looked like Sam had an enlarged heart...but not to fear as it could be an error by the technician. Not one to let things rest, I plagued the recommended pediatric cardiologist (including a phone call from my neighbor who knows the secretary well). One echocargiogram later we were told Sam was fine with a very slight heart murmur but nothing to worry about.

Thursday, Sept 10th, both boys had their annual physical. For this we took them to our pediatrician in White Plains. Clean bill of health all round but some concern over the headaches and I was asked to keep a headache diary and an Xray was ordered to check out the chest pains. This doctor was not settling for the results we had.

Saturday night I called our pediatrician as Sam was so uncomfortable. She recommended seeing if a fever started and then taking him to the ER. I did get up and dressed that night but Sam fell back to sleep without a fever and so I left it.

Sunday morning I knew I should not wait for a fever and we marched off to the Tully Center. Once again they felt there was not much to be concerned about but they did want blood tests so sent us to the ER. I almost left as Sam was feeling better but something told me to stay.

The first diagnoses was constipation. This made sense as Sam had not eaten or passed anything for a couple of days. Then the blood work came back. Doctors mean well and I cannot imagine having to break bad news to a mother, but he rubbed my arm as he entered and I know something was life-threateningly wrong. The ER doctor asked the technician waiting to take Sam for more Xrays to mind was racing.

I stood face to face with a man who would have done anything but tell me my son had white blood cell counts that went through the roof. The room started to close in... I looked at Sam and knew our life was changing. I asked what that indicated...Leukemia. I asked if there could be anything else...ANYTHING!. No...the white blood cell count was too high to doubt it...but Sam need to have new tests to formally diagnose it.

Nothing seemed real! Surely the tests would prove he was wrong...the doctor's head Sam had Leukemia.