Chemo, Pnumonia, and Going Home!!!

 Per my last post, becuase his lung collapsed during surgery last Friday, we were unable to begin treatment as planned.  We worked with him hourly to breathe through a sperometer to induce a cough, but it was a very difficult power struggle, and we were less than successful.  He was still in quite a bit of pain from surgery, and he had a new wound to contend with that was quite sore - his port.  On Saturday morning, he had an X-ray of his lung, and we were crossing our fingers that chemo could start becuase the type of tumor that he has is very fast growing.  Since the brain tumor was not impeding any brain function, we wanted to prevent any chance that it may block a channel. Unfortunately, his lungs were too congested, and not strong enough so we held off another day.  On Sunday morning, the lung culture came back from the lab - a confirmation of pnuemonia.  However, they decided they couldn't wait for the chemo any longer, and ordered the pharmacy to prepare the first dose.  They started him on an antibiotic, and we were very happy he was going to receive the treatment.

It takes quite a while to have the chemo cocktail prepared, and it was a day filled with anxiety for him.  When he realized he might lose his hair from the side effects of chemo, he put it together that he has cancer.  Up until this point, we told him he had a tumor that was going to be treated with medicine.  Becuase there has been so much overload for him, we made a conscious decsion to answer all questions honestly, but to only present with information needed at any given time.  Once he asked me if he had cancer, I felt like I couldn't protect his childhood innocence any longer.

His only personal experience with cancer are stories that have ended in death, and he was very frightened.  We had a long talk about all different kinds of cancer, and I assured him that the kind he had was very curable.  He also asked if there was something he did wrong to cause this, and it just broke my heart. He wondered if it was something he ate or didn't eat, or somewhere he went. Of course I told him he had nothing to do with it, and couldn't do anything to prevent it, but I am not sure how convinced he was.  We had a wonderful male nurse who sat with him and gave him quite the science lesson on cells, and cell aptosis, and by the end of the conversation, I think he felt ok.

Around 5pm on Sunday night, we started the first of 3 days of chemotherapy.  The first night consisted of 3 different drugs that dripped into his IV over 3 hours.  His biggest fear is that he will lose his hair.  He was absolutely obsessed about it.  His nurse assured him it will take a few weeks before he has any hair loss if any at all, and I assured him that I would get a wig for him and many different hats and he can choose his own style.  They also work very hard to try to avoid the harsh side effects of chemo.  Every 2 hours round the clock, they trade off between benedryl, ativan, and zofran to counteract any nausea that may occur.  We got through the first night pretty well, and I was super pleaseed he wasn't sick.  His next dose was Monday and then again Tuesday.  We noticed by Monday evening, he was ok as long as he was laying in bed, but any time someone asked him to stand up like in physical therapy or even to just sit up caused him great discomfort.

We expected to stay in the rehab part of the hospital for a few weeks after this chemo round, but we got very good news after his physical therapy on Tuesday.  They decided that we could go home on Thursday, and we were thrilled.   We set up an appointment with our lovely nursing case manager Amy, who taught us as much as we could learn about caring for someone undergoing chemotherapy at home.  My head was spinning, but I was super happy to hear a few things that I know are important to Noah.  There will definitely be some days that he is uanble to play and have visitors, but there will be many when his blood count is good, that he will be able to participate in many activites, and see friends as we see fit.  He can have playdates, and swim, and even bike if he's up to it.  Just no contact sports....which of course was fine for us.

I am writing this blog from home now, and very happy to report that we are home altogether as a family.  Noah was released today from the hospital after a pretty successful first round of chemotherapy. His brothers were so happy to have him home, and we had dinner together for the frist time in over two weeks. We have been so fortunate to have so many people reach out to us sending their wishes, prayers, goodies, food, and love.  We feel so supported and loved by our friends, family, and greater community, and the support brings light to this very heart-wrenching experience.  Thank you to all of you!!!  If all goes well, we will be home for the next 17 days, and then head back to the hospital for a 6 day treatment.  Round 2

Noah arriving at home.  He must wear this chest brace for about a month while the bones heal in his spine.

We had a visit today from our dear friend Sagiv.  Gave us an entire lesson on Purim, taught Noah the entire story, and read him the entire "megillah."  The one shown here is an ancient scroll made from lambs skin.

Simon and Eli will be returning to their rooms tonight.  They have slept in Noah's room for the past 2 weeks, waiting for him to return home.