First week home

We have been home a week now, and things are going as well as they can.  The first few days home, Noah was still recovering from the chemo, and was still pretty nauseous.   He woke up throwing up one morning, and for a few days was just laying around, not wanting to move.  But it feels wonderful to have him home, and it felt amazing to have dinners together again, and have some semblence of normal or our new normal.

By Sunday, he seemed to perk up a little, and things went up from there.  Monday, he had to have some blood work, and was obsessing about it all weekend.  When Monday arrived, he was again lashing out at me that it was my fault he had to do this, and why was I making him, and he was pretty upset.  When we arrived to get the blood test, I was fully prepared.  Arm was numbed, we had a kit kat ready to go, and even purchased a little tool that you put on your arm that vibrates, which is supposed to change your brain connection to the pain.  We got into the room, and he went crazy.  Screaming, arguing with me, arguing with the nurse.  I got him to sit in my lap, and they had to bring someone else in to hold his arm straight.  I assured him that he had been through much worse, and we had taken all the right steps so he wouldn't feel a thing, but there was no rationalizing with him.  He screamed as the needle went in, and then a calm came over him.  I know it didn't hurt as much as he imagined, and tried to make that point to him, but he disagreed.  We got through it, and I have been trying to process it with him all week because this is his new normal. He will need 1-2 blood tests a week during this chemo period, and he will have to come to terms with it.

His walking has improved greatly.  He is more cooperative with his brace, and in general is walking ok.  He is not that steady on his feet yet, but is definitly able to get around and wants to be independent.  Over the weekend, he had 2 different friends come to play which was so positive for him.  I think he felt normal again.  He also loves receiving texts and videos from friends.  Please text me for his phone number is your child can communicate with him.

My dad doesn't like to leave his side.  He comes in the morning at 7:45 before I take the other 2 kids to school, and they play cards.  Between my inlaws who taught him how to play poker in the hospital, and my dad who has taught him gin rummy, he is becoming quite the professional card player.  He had a friend come from school to say hi which was awesome, and we welcome more friends as long as his white blood cell count stays high enough.

He had his first physical therapy appointment today.  It was another battle to get him there, though it actaully was a very positive experience.  He has been asking us to get him an electric razor that you sit on so he can go on the trail with his brothers, and the physical therapist thought it was a perfect thing for him.  So that was a win for him.  The therapist was teriffic with him, and at the end I think he even had fun. She works with kids who stuggle through cancer, and was able to talk to him with compassion, understanding, and even helped him feel better about his situation. I am hoping he will want to go next time.

We have one more week until we head back for a 6 day chemo round in the hospital, and at some point after that, they will take another MRI to make sure the chemo is working.  Once again, we feel so fortuante and blessed by all of the love and supoprt.  We have heard from friends and family all around the world, and it is a huge boost for him and all of us.

Some highlights from the week:

My brother and nephews sent this from New York.  Noah just loves it and we keep it in the entry of our house.

His friend Race from his class came to visit, and they had a tough few games of War!!!

Simon had a baseball game.  We got to go and support him.

We heated the pool for the weekend.  Hoping Noah will jump in soon!!!  

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.

A small victory

In our new found world, today was a day to celebrate.  We have all been anxious to start chemo as soon as possible because of the speed rate of the tumor. First thing this morning, they did another x-ray of his lungs and decide that even though there was not really improvement, we would proceed with the chemo anyway because he did not have pneumonia. This was a step in the right direction.

The pain from his back has significantly decreased and is mostly very sore from such an extensive surgery. It was most evident today because he was able to pull himself into a seated position much more easily, and he even got out of bed a few times and took a few steps. Even though he was only able to walk 5 feet with support, it was a major improvement. In addition, his mood has returned to normal, and his agitation is less. We are celebrating.

We waited all day for the chemo to be prepared. Apparently, there are over 50 types of chemo, and hundreds of derivatives and mixtures. As it got closer to administering it, he was a little more anxious. His first and foremost concern is losing his hair. We talked about getting a wig if it made him more comfortable, and he insisted that I take photos of each side of his head so we could find a wig with the exact same color and texture as his. He told me he's like his hair dresser to cut it in the exact same style as now. He even joked that he'd never have bed head again. I was pinching myself that his spirit was back.

He also asked me a lot of questions regarding how this happened. He asked if it was something he did or didn't do and was it his fault. I am so thankful he is asking these things so we can help him process all of this. I, of course, assured him it was nothing he could have done and his nurse gave him a lesson on cells. He loved his science lesson and felt much better.

The nursing staff is amazing with him and prepares him for each little step along the way. He did have a pretty good stalking technique to receiving his first dose. About 30 minutes before we began, he asked if we could play monopoly. First time he asked to do something the entire time we've been here. I am sure he calculated the fact that monopoly is by far the longest game ever. It wasn't a coincidence I am sure.

Around 6 pm, he received the first dose. It dropped in for about 3 hours. They do everything they can to manage the side effects. So far so good.

We are on our way!!!

Port Surgery and Chemo?

Thank you for following Noah's journey here.  I moved sites for various reasons, and I am glad you found us here.

Because the tumor is so rapidly growing, and it has not yet affected his brain, we are in a race against time to get the chemo started.  The plan was to have his port put in during surgery Friday morning, and then start chemo the same evening.  The day started very difficult.  When he woke up, he discovered that he was not allowed to eat, which immediately set off the bells that he was having another surgery.  He is still so scared to be sedated and feels so out of control, and since food is one of the only things he can decide and control, withholding it from him is an absolute injustice.  He was an add on to the surgery schedule, and so we couldn't even tell him when he could eat again.  He was screaming, agitated, and super annoyed at the prospect of an entire day without food.  Anytime somone mentioned the word surgery or port, he went ballistic.  They did reduce the steroids, so we are hoping the rage will come down soon.

We got news that they would do the surgery around 2pm.  I met with the surgeon and we went over all the risks.  He kept telling me how low the percentage was that we'd have any complications, and I just rolled my eyes since percentages have really not worked in our favor.  He went for surgery, and when he woke up we were told one of his lungs' collapsed during the procedure and that we would have to postpone chemo.  (Serious hiccup of the day, and clearly odds not in our favor).  We would have a chest xray first thing Saturday morning to see if he could start.  

On a positive note, we were moved out of ICU and onto the oncology floor.  While it may not sound so amazing, we at least have our own room for now, and he is not being woken up and disturbed by a nurse every hour.  It is quiet and he can rest more.  In addition, we have been able to ween him off of many of the drugs, and he is returning to himself a little more.  In fact, he doesn't even remember telling the nurse to "shut her pinhole."  Which, if any of you know Noah, is totally out of character.  

He woke up Saturday morning happy to order his breakfast his mood was much more stable.  The technician came in to give him an xray but was unsuccessful becuase of the amount of pain.  He decided he'd rather try to stand up and go down to the lab in a wheelchair to get it done.   I was celebrating.  Unfortunately, the X-ray showed his lung is still not ready to endure the chemo so we will have to wait another day.  

We also had a heart to heart talk today.  He finally asked if he had cancer, and I told him yes.  We had used the words tumor, mass, chemo, but not cancer.  I told him that he had a certain kind that was very treatable, and went over the treatment course.  We spoke about him losing his hair, which is just devastating to him, and we talked about different options he had.  I am hoping to be able to get him a wig that matches his hair before he loses it.  He is very scared, and we are just heartbroken.

He did receive some very close friends this afternoon which I know made his day.  They were able to play xbox in his room which I know he loved, and we are grateful for.

We are crossing our fingers and toes that he can get the chemo tomorrow.  

Roid Rage, Pain, and Humiliation

The last two days have kind of been blurred into one. The morning he woke up from surgery was like the beginning of a whole new life for him. Up until now, he only knew he had a lump on his back, and that it needed to be removed. He also knew that they were not going to be able to remove the entire thing, and that he would need medicine to get rid of the rest of it, but we wouldn't know what until after the surgery. I assume that he thought that after surgery, his back would feel better, and that his ordeal might soon be coming to an end. 

Quite the contrary. He woke up to find a catheter attached to him, an inability to move on his own, and a tremendous amount of pain. He was screaming, agitated, crying, and hurting, and could not understand nor comprehend why he had to be here and suffering so much. I was the main target for anger, and took quite a beating. Pinching, hitting, and screaming at me. Blaming me for the entire thing. But mostly, I think internally he knew that we were here for the long run, and the life he was telling me "I ruined" was now changed forever.

They scheduled him for an MRI this morning for both his brain and his cord. We were told initially that they would need to do a brain scan post surgery, and it sounded like something that was way down the line. Apparently because of the uniqueness of the tumor, they moved up the MRI to this morning.

It was a disaster. His worst nightmare coming true again. The dreaded anesthesia. He is so fearful of being put to sleep again that he was an absolute mess. Adam stayed the night, and helped him through the anxiety. I wasn't here to witness what happened, but he was overly anxious, screaming at people, and inconsolable. Once he came out of surgery, the mix of the anesthesia and steroids came into full effect. 

He was telling the nurses to f-off and shut their mouths, and more superlatives than I knew he knew.  I was kind of embarrassed, although deep down, I was kind of happy for him that he was able to scream whatever he wanted. It was almost an out of body experience, and one that the in house psychiatrist decided needed more medication. 

MRI came back with good and bad news. They found the tumor actually originated in his brain near the pineal gland. It then dropped a "seed" into his spinal cord where the other tumor was found. He has a very rare form of tumor called a Yolk Sac tumor, and they don't believe it's been there very long. Maybe a few months.  The upside is that the treatment is very effective and the cure rate quite high.  

The treatment plan will consist of chemo six times every 3 weeks. Sometimes we will be outpatient, sometimes inpatient for 6 days depending on which cocktail he needs. After those 18 weeks, we will take about a month long break and then start 6 weeks of radiation. If all goes well, we are hoping he will be able to start 5th grade on time. Its very likely we will go to San Diego for the radiation because of the state of the art equipment they have there that doesn't radiate more than what is needed. 

We are waiting for him to get a port right now and then they will begin chemo tonight. 

10 Hours of Surgery

Today was the day.  Surgery was scheduled for 8am and we had an enormous amount of anxiety leading up to it. Last night, around 8pm the surgeon came to evaluate him and discovered his mobility had seriously declined since we came to the hospital on Friday. He was unsteady on his feet, and not confident to walk even 3 feet without holding onto something. It was evident that the pressure on his cord was growing and that the surgery was needed sooner than later. Because of the decline, the doctor thinks that he will need inpatient physical therapy for a few weeks, but we won't know for a few days. 

Adam slept at the hospital last night, and I came back this morning around 7am. Noah was screaming at us that he wanted food and was 
blaming me that he was here and couldn't eat. He was terrified of being put to sleep. Over the weekend I think he came to terms with the fact that he needed to be here, but he was still quite angry and frustrated. He kept asking us why they couldn't just give him a pill to get rid of it, and it was our fault he was here. 

When they came to get him to go to pre-op his stalling techniques came out in full force. Questions, stretching, needing to go
to the bathroom.....the list went on and on. Eventually we made it to preop,  and we met the nurses, the anesthesiologist, and waited for the surgeon. He was absolutely hysterical. I could not understand why they couldn't administer medication sooner to calm him down. I was grateful for the child social worker they had with us, and my dad and brother kept him entertained with stories about how I used to torture my brother, and never get in trouble.  Which of course was not the case. 

Eventually they got him to get on the gurney and administered versed.  He got fairly dizzy, calmed
down, and they took him in. Then the countdown began. We were told the surgery would be around 8 hours, but that if it went longer it didn't mean something was wrong. I have been most concerned about today. My fears were that he would be impaired long term because of the cord,  and lose mobility and or his walking ability.  Furthermore, I really didn't like the idea that he would be under anesthesia for so long, but I knew there was no choice. We were updated every two hours by the nurse, and were told each time that things were going as planned.  He really did not come out of surgery until about 7 PM.  The entire ordeal took about 10 hours. 
At the start of the day I didn't know how I was going to make it through the entire day. We are so fortunate to have such supportive friends and family who sat with us, laughed, told stories, and cried.  We received messages all day from concerned friends and family members, and we feel grateful for everyone. 

  The surgeon reported to us that everything went well, and that his muscles responded better to testing after they removed some of the tumor, which was a win. They were not able to remove all of the tumor because it is wrapped around the cord with many tentacles. The goal today was to relieve pressure and get a diagnosis, and we will have one within the week. The cells are malignant, which was pretty much expected, but we were given a good amount of hope that they will be very treatable with chemo. First we need to know what kind of cancer we are dealing with. 

When he woke up, he was angry and yelling at me for water. I was happy to be screamed at and thankful that his feisty, relentless personality was there. He will need it in the coming months. 

Entry to Hell

We never imagined in a million years that we find ourselves in this position. What started as some back pain has turned into the biggest fight for our son's life.  At the center of all of it, is our precious, independent, brilliant 10-year-old boy named Noah. 

About 2.5 weeks ago Noah started complaining about some back pain. We figured it was a pulled muscle and treated it with Advil for about a week.  However, the muscle spasm's were keeping him up at night, and the pain was becoming more intense. He went for an x-ray, and found that he was super constipated and backed up.  We started on a regimen of MiraLAX two times per day and were told that it would take about two days to work. While we did have some success with the  MiraLAX, the intense intervals of pain increased. We took him to the emergency room in the middle of the night, and they could find nothing wrong. They did an ultrasound looking for twisted bowels, but came up dry.

 We returned the next evening to the ER, and they performed another x-ray and found that he was even more backed up. So, they prescribed the protocol for somebody who is preparing  for a colostomy. In other words, a major cleanout.  After an evening of total hell, we felt confident that the problem was resolved. We went back to the hospital to confirm that his bowels were clean, which they were, and we were told that with children, there might be some phantom pain for a few extra days until the nerves calm down.
That afternoon, I took him to Target to pick out a present. When we got out of the car he was complaining that his legs felt a little asleep. I figured he was dehydrated and just out of sorts. We took the escalator to the top, grabbed a cart, walked about 20 feet, at which point he tripped and then on his next step, face planted on the floor. 

I knew something was wrong. 

He argued with me and told me he uggs were just high and he was tired, but deep down I knew otherwise. I called my dearest friend who is also our pediatrician and she said it was time for an MRI stat. We assumed we were looking for something in the bowels. We headed to the ER at Children's hospital and they also weren't convinced that there was anything else to worry about. In fact, without my friend I don't think we would have even been able to get the MRI that night because he wasn't showing any neurological symptoms. 
She contacted a neurosurgeon and together they insisted that we get the MRI. He was absolutely hysterical about being put to sleep and agreed that he could stay still during the procedure. Around 1am, we headed upstairs and he tried with all of his might to stay still. What we didn't know was that lying down flat caused him agony and so he tried to grit his teeth and work through the pain. Watching him was absolutely heartbreaking and painful. They eventually came in and said we'd have to do this sedated and that there was a reason he couldn't lay down. That's when it hit. They found something. They weren't very clear about it, but I knew. 
After finding the anasthesiologist and coordinating that, we went back up for the MRI. It started around 2am and he didn't finish until 4:30 am. We were on pins and needles. Because of my friend, who is a selfless human being, our Images were being looked at by the head of neurosurgery by 9:15am. We were in his office with a diagnosis:  Tumor wrapped around spinal cord that is likely cancerous. I couldn't even believe what I was hearing. It was like a bad nightmare that I couldn't comprehend. I couldn't even look at the doctor. I kept staring at my friend for cues, and she didn't look good. I told my husband that he could hear the rest and I had to get out of there. It was too much to comprehend. Why him?  Why this?  He's only 10 years old!! 

They will remove as much as they can without impairing my Noah, and treat the rest with chemo. We won't know what kind of cancer we will be dealing with until it is biopsied, and the surgery will take place on Monday or Tuesday. This is our entry into hell. 
We feel absolutely blessed and comforted by the outpouring of support by friends and family. We are truly part of an amazing community and appreciate all of the kind thoughts, prayers, visits and visitors from far away. We have no other choice than to get through this and fight like hell. Noah came into this world fighting, and has a spirit that is strong, determined, and relentless. He will make it out on the other side stronger and more resilient. We are sure of it.