Resources

We know that everyone is worried about the transplant process and about the relapse. Here are a few links that have more info if anyone is curious-

AML
http://www.macmillan.org.uk/Cancerinformation/Cancertypes/Leukaemiaacutemyeloid/AML.aspx

Bone Marrow
http://www.bmtinfonet.org/

Happy Mothers Day

Amaey had a good couple days.

He seems to be himself, accepting, listening, questioning, and contributing.
Tomorrow we meet with the transplant team and get the lay of what is ahead. This is first of many meetings we will have. Tomorrows meeting is focused on the search for donors and how we go about it.

Tonight is day 5 of his chemo. This is the last dose for his 1st induction phase. Now they watch out for side effects like mouth ulcers and watch his kidney and liver function very closely.

If he is stable they might let him go home for a few days. They are always worried about kids staying here too long and then catching something here. If they do let us go it will be on very strict terms of isolation within the house and coming in to clinic every other day. We don't know when or if this will really happen.

Amaey got to chat with one of his buddy's over skype and his other friend briefly stopped by. He was so happy for that. The pain and trauma from the initial news seems to have worn off him and he seems happier.

My sister-in-law left today. She was great moral support for us. Just knowing that she was looking over his protocol and being a sounding board was enough.

Arjun has been coming and spending time too. They built legos and played PS3 games in the room. One of their cousins dropped off their PS3 at the hospital and that has been a life save for Amaey.

Day 3

Amaey was randomized to Clofarabine and Cytarabine and they started his chemo on Tuesday night. He will get these 2 drugs once a day for 5 days and the chemo will last 2hrs each. They started the 1st chemo at 11:30pm and the 2nd at 1:30am. As soon as the chemo started going in I could see that he was restless. He was sleeping and suddenly woke up feeling sweaty. Tried to fall asleep and then started complaining of neck pain which became a shooting back pain added chest pain to that. We asked for tylenol for the pain. I rubbed his back, did some breathing technique and just sat there with him. He suddenly wanted to walk, and then he would sit on the bed and stare. We played with his plasma ball and listened to his musical snow globe and red Ripley's believe it or not at 2:30am.
They finally brought tylenol in and after trying different angles of the bed he finally fell asleep more because he was exhausted.

Next morning however he woke up with a bright smile and ate up the wonderful pecan pancakes with sausages that Apurva and Swati brought from home. Apurva had also bought a new wireless card so that Amaey can play multiplayer games without the hospital's firewall. This made Amaey so happy and connected.

I left to go home and around 2pm they did a procedure on him to place a pic line in his hand and I heard from Apurva that it was a little painful because something was obstructing the tube. They had to have radiology involved and finally they got the line in. They need two access points in his body because his port is used for round the clock hydration while the other line will be used for transfusions and secondary aid. Apurva said the night was relatively easy and they both slept, which is wonderful.

This morning however when I came to the hospital Amaey was very grumpy. The chemo had knocked down all his counts and his hemoglobin was nil and his arm with the pic line was hurting bad on top of that his lego universe game wasn't working.... he was just having a bad bad morning. He cried a lot because he was feeling frustrated and all he wanted to do was go home. He was entangled in lots of wires and probes, nurses kept going in and out, Swati came in from home and after 2 minutes Raj stopped by and Amaey got really mad that everyone was coming in at the same time. He was feeling very overwhelmed. So everyone left the room and stayed outside in the lounge area.

We let the nurse come in after 10 minutes since she had to start his blood transfusion and we made the room dark and comfortable and he finally fell asleep. It took 3 hrs for him to settle down. But when he woke up he had a smile and he asked for food.

It is amazing how much his mood and well being affects us. When he is feeling so low we feel sad that we can't really do anything to help. He is growing up too. When he was little we could distract him with tv, or singing, or some crazy antics but now it is not so easy. It really has to come from him otherwise the change does not take place. Tonight is day 3 of the 5 days of chemo... 

New day New plan

Amaey starts his new chemo treatment today. They have sent his bone marrow and blood samples to St. Jude and once they do a randomization test on him we will have a final protocol to follow.

Whatever is picked, he will be on those very aggressive drugs for 7 days. They have already started pre-medicating him and will continue for 18 hrs straight.

After the 7 days chemo they wait until day 22 and do another bone marrow to check on the blasts.

Based on the results they will either have to give more chemo or if they have a donor he will go for a transplant.

Some hard news

Amaey has relapsed yet again. They call this a chemo induced relapse. His original diagnosis was for ALL but now his relapse is for AML.

The journey ahead is going to be a really hard one. He will have to undergo a marrow transplant too.

He is doing fine and that is a good sign. We are doing fine for the moment too. Arjun is really upset and we have asked the hospital counselor to be involved with him.

There will be lot more hospital stays with this treatment upto 30 days at a stretch sometimes so he will have to stop his school and activities again. We have decided to involve Arjun lot more because he is the only kid that will be allowed in his room at the hospital. 

They consider this a 9 mth to 1 yr long treatment. We don't have more details yet. 

Today they did an EKG  and tomorrow he has to undergo another bone marrow procedure and a cardiogram to check all his baseline levels before starting treatment again.

I just wish there was a hole we could hide in. Take him away somewhere so that none of this really matters. What if we don't go ahead with this treatment? What if we just act like this never happened? 

Amaey has so much to offer to the world, a young scientist, an inventor, a chef... these are his dreams and aspirations. We pray and hope that he can fulfill them someday. We pray that he will come out of this ready to take on the world.

A strange week

Amaey has been a little slow for the past 3 weeks. He has had a cough and cold and he has been a bit tired. None of this stopped him from going to school karate, sleepovers. However, he would need a nap everyday and that was odd. Usually he naps only if he is really wiped out.

They stopped his oral chemo and meds because his platelets were on the low side. We did a chest x-ray to make sure he did not have any lung infection, luckily it was all clear. He had his 5 day challenge and it knocked him down completely. We had not seen him so out of it in a long time. He was miserable, restless, and blah all over. He could not go to school during those days either.

5 day challenge was done with and on Monday we went in for his regular cbc. Usually a nurse calls and gives us his lab results but today I get a call from his doctor and that does not feel good. Amaey's platelets were still low and all the other numbers were petering down too. His doctor told me that he would like to check his bone marrow to rule out a relapse. Since there was no space in the unit the procedure was scheduled for Friday but I insisted and trying to do it sooner if possible. Usually the platelets and the marrow are connected. Apurva and I were very anxious by the news. My parents are with me but I could not tell them anything, did not want them to worry and we did not want the boys to overhear. We definitely did not want Arjun to know. We know he would be worried.

Tuesday night Amaey had a nose bleed and when he went to school the next day his teacher called me and to say that he had another nose bleed, I knew something was wrong. I called the clinic right away and they called me back in a few minutes and asked us to come in for a platelet transfusion.

I was cringing at the thought of being in that hospital room for 3hrs. They did another cbc and this time all his counts were really low.Not feeling good at all at the sight of those numbers. They decide to draw more blood from him to do a chemistry. We were at the hospital from 1:30 and at 6pm his doctor stopped by to talk with me. They had managed to do his procedure on Thursday at 1:45pm. His doctor looked worried but when he looked at the chemistry and the cbc results again he told me that there was a soft hope that all was fine. His Red blood was high and his uric acid had come back normal. He said those were good signs but he really wanted to see his marrow. He also wanted to do a lumbar puncture and look at his spinal fluid incase there was something in there.

Amaey has to fast for these procedures and it is amazing how he does not complain at all. Apurva and I both went for the procedure. We waited in the waiting room while they did his procedure and later took him to the recovery room. It felt like a long wait because we were talking about all the possibilities that lay ahead of us. When they finally called us in the recovery room, Amaey was still sleeping from the anesthesia. His doctor had told us that he will give us preliminary results in an hour after the procedure so when they called us at 5pm we were really panicking. As soon as the doctor walked in the room he has it's all good... it's all good... we were in a shock... we hugged him, which we never do. we were all so relived. When we talked more the doctor told us that he was really worried and had already started looking at relapse protocols. However, he has sent the marrow for few more tests to get a definitive study back but when he looked at the marrow it looked good and he saw some new cells which was positive.

So Friday, we are all happy and getting packed for a very special weekend away. We were invited to go to Skywalker Ranch as a thank you for few families of the Cars 2 team. Until yesterday we had not even thought about this weekend because we had no idea what life had in store for us. We were so glad to be able to go away and celebrate. We had an amazing dinner there and were put up in a wonderfully appointed 2 bedroom villa at the inn. Amaey seemed slow, and had started coughing a lot. After dinner he was very tired so he went back to the room and we stayed behind and mingled with everyone while Arjun was busy with some kids too. Next morning we all enjoyed a lazy start and a wonderful breakfast with all the families. Everyone was meeting back at 11am to go on a hike around the property so we went back to the room to get ready. Amaey looked really slow now so Apurva took his temperature and it was 101.5.  Not good. Usually anything above 101 means emergency. We decided to wait an hour so that things could settle. I took his temp again and it was 102.5. I called the hospital and they asked us to come as soon as we could.

We are in the hospital now and will be here for a few days. Amaey is neutropenic and still coughing a lot. His fever is under control but they need to wait for the cultures to come back and for his numbers to go back up. They have started him on ivy antibiotics too. I'm staying tonight and then Apurva will come tomorrow.

The day away to Skywalker Ranch was magical. We felt like we were gone away for a long time, in a different world where time stops and the world moves slowly. We are so glad that we all got a day of pure relaxation, now at the hospital I'm not as stressed as I would have usually been. Hopefully all will be fine and we will be home in a few days.

Relationships

Amaey was diagnosed in November of 2005, this is 2011. Time does fly, we are in the 6th year of his treatment.
I have seen so many families at the hospital over these years. Some families come in with both sets of parents, grandparents, all kids. Some families come as a single unit. Some come in as a happy family and by the time they are in the thick of it all they have no family left.

Apurva and I have done relatively ok over all these years. After each major setback that Amaey has faced we have reevaluated our relationship and felt happy that we are still stable. It has been really hard but we have managed to keep our ship afloat but the costs have been high.

I was talking with a mom in the hospital whose child relapsed while they were on holiday in the US from India. They could not go back, they had to start from scratch over here. I see her at the hospital all the time and I asked her, do you resent your husband? I said, do you ever feel that your husband just continued his work, luckily he could get a transfer from his work and his life stayed quite stable while you are here in this foreign land adjusting to a whole new reality?
She said, I'm really surprised that you ask this question so honestly, I was resentful when my son was initially diagnosed, felt like nothing changed in my husbands life. He could wake up every morning and leave the house.
I said, it is normal to feel that way, I feel that many times.  However, there is a choice we made as a family for 1 to be a caregiver and the other to earn a living and continue to maintain the insurance and stability.

I have thought about this conversation over and over in my head. I wonder what the main caregiver and the secondary caregiver think about? I wonder what experiences each goes through. I wonder how these experiences shape them as a person. I wonder if their roads meet every now and then or do they trudge along a parallel path over time without really knowing that. Two people with one story that binds them but two completely different goals in life...

3 weeks of hell

3 weeks ago we found out that a stray blast was found in Amaey's spinal tap. It could mean nothing, a fluke, completely random occurrence, OR it could mean a relapse. We had to wait 3 weeks to repeat the test.


The first week went in denial. We did not want to talk about it. We did not want to even entertain the if.
Second week however was hard, Amaey's counts were low, he was neutropenic and the panic set in. He was home the entire week because of his low counts. Seeing him home was a constant reminder of things gone wrong. My stress level went up and I pulled a muscle at the gym and was in bed for 2 days. I understand depression. I understand what people that are depressed feel and go through. I can see how hard it can be to get out of bed, to move and find a reason to wake up and do something with your life. It is a spiral effect, you can just get sucked deeper and deeper into it if you do not have a really strong will power. A strong family and a strong network of friends. Apurva and I decided to go away for the weekend to Sonoma and we came back recharged to take whatever might come our way.
The calm of the weekend lasted for a few days until Friday when Amaey started looking tired. We spent the entire weekend just staring at his face, obsessing about his skin color, the color under his eyes, his energy level, how much food he had eaten or not eaten. By Sunday we felt that something was up...


Today, Monday,  he went in for his spinal tap and we just got the preliminary results, and they were negative. The CSF cell counts for Amaey were normal, with <1 WBC and <1 RBC per high-powered microscope field (normal is between 0-5). 


He is fine. The stray blast was just stray and that is all. This just shows how vulnerable our life is. Any negative test can drive us up the wall. A tiny stray blast has the power to stop us on our tracks. This was so stressful. I hope no one has to go through this in their life.

You are on hold, please wait.

What does it mean to be on hold. I'm not one of those that can ever answer that question. Or I should say I wasn't one of those. For me being on hold was not an option, you did what you felt like, when you felt like it. If it is important to you, you will find a way to do it why should something hold you back.
But being on hold becomes part of your life when you become a cancer parent. You know in India when you would call a government office you would get a  recording that would say, you are in queue please wait. Yup that is how life is for a parent with a child fighting a life threatening disease.
You are given a timeline and you dash to make it through, rushing for the finish line. You put your entire life on hold to make the deadline. When you get to the finish line, suddenly you find out that there is more, the race is not over yet. You pack-up your sandwiches, put on your running shoes and get on track, again. In the meantime life has passed you by. More than half of your child's life has gone by.
You look for the silver lining. The brighter side of life. The meaning beneath all of this. The underlying message.
Funny thing is, this staying on hold business can become part of your life. You can get good at it. You can suddenly carve out a niche by figuring out how to make something out of nothing. You can become a queen at making the most of cancelled plans. You can carve out some memories from nothing. You learn to make the most of rainy days.
Being on hold becomes an alternative lifestyle. You know, like being a hippy. No cares, no time lines, nowhere to go. Just love and your, forever on hold, lifestyle.

Where are we

We are here, trudging along. When the treatment slows down the anxiety amps up. You don't need to be hospitalized, don't need to see the doctors that often, don't have many alarm bells ringing either. BUT restless nights and scary dreams set in.
It is too quiet, is everything all right. Should we be doing more. Should we be checking for relapse markers. Crazy thoughts that should not really be entertained just come in, uninvited.
Amaey is at school now except for the once every month chemo which knocks him out for a few days. Arjun is in 6th grade still playing his tabla and now guitar as well. He is taking a break from 3 times a week of swimming and is trying out fencing and he really likes it.
Apurva is busy with wrapping up Cars2 and having fun with his iPad.
I got to focus on Kids & Art and we did an Art Walk in December 2010. It was a wonderful event. We had almost 60-80 pieces of art displayed at 6 local businesses. It was phenomenal to pull an event of this kind. What amazes me is that we human beings have the power to do whatever we put our hearts and minds on. I don't know how things happen but they do and when you look back on them, it feels like an out of body experience.
I'm also back to teaching and taught 2 sessions last semester and will do the same in the spring session. Sometimes I feel like I should not be working at all and should instead focus 100% on Amaey's health. So these 3 weeks that college is out is a good trial for that and I have to say that I cannot do that. I just can't. I'm driving myself crazy with anxiety. A dear friend just got diagnosed with cancer and it has brought the worst memories back from our first year of treatment. I had thought that I had moved on and forgotten all of that but it's not true. If I did not work and keep myself busy I would become a nutcase.

His Holiness

Today Amaey and got to and meet Dalai Lama at the Ronald McDonald House.

Amaey is on a 4 week chemo cycle and is hit quite hard because of it. This was his third week and his counts were low and he is neutropenic so they could not give him all the chemo he needed to get.
He had to stay home from school and I cancelled all his extra curricular activities for the week.
However getting the blessings of Dalai Lama does not happen everyday so we really wanted Amaey to attend this event.
His Holiness is in town for a conference on Compassion through Stanford and the Compassion Project. One of the donors arranged for him to stop by at the house and one of the LPCH social workers asked us if we would like to go and I jumped on it.

It was a mixed experience, on one side Amaey was neutropenic and I had him in a room full of people. We were supposed to see him at 2pm but he did not show up until 3:45. I could see Amaey fading and I was feeling really guilty. However when he walked in, he quietly went to the kids, held their hand, kissed their foreheads, hugged them and then he stood quietly for a few minutes just looking at everyone. I felt so emotional that I started crying. There was something in the room, there was this warmth on his face, there was this purity in his look. It was beautiful.

When he finally started talking he said, I know what you all are going through is really sad. He said that there are only two things that can happen, either your child can get better or not, the most common feeling during such a time is worry and sadness. However he sad, if we spend all the time worrying and being sad we are losing focus of the one thing we should be doing, giving love and affection to the child.
Sometimes sadness can takeover life and then we have space for nothing else. He talked about how fortunate we were in this country to have all the facilities and care compared to many other nations where children would have died from sicknesses that he felt around the room.
There was a 3 year old boy who was getting a kidney transplant tomorrow and his holiness blessed him with a warm hug.

After he was done talking he placed a white silk scarf around each child's neck. I felt sad that I did not get a one-on-one experience with him but then I realized that I had already felt touched by his presence, I really did not need a physical confirmation. I was there in that small room very close to his Holiness and I felt his intense presence.

When I asked Amaey about his experience, he was so untouched by the whole thing. He said he was bored and really wanted to get out of there and that his holiness used the word sad too many times. I was amazed at his words and his honesty... I'm sure some day he will make his own connection and feel his own tug. When that happens I'm sure he will feel elated and fortunate.

Chemo and all

Amaey has a new protocol where he goes in the hospital once a week for 4 weeks to get his chemo. It takes us  5 to 7 hours on those days. These are long days but the highlight is... we come home. Today is the 3rd week so after the 4th cycle he will be on his honeymoon week again where he goes in once a week for 6 weeks for labs and then take his oral chemo pills.

Grandparents are in town and it has been wonderful. We took a holiday and went to kauai for a week. We had Amaey and Apurva's dad to worry about. Luckily everyone came back home unharmed and we did not need to pay a visit at the local hospital. However, we did locate it and made a mental note of the distance from the hotel and such.

So far Amaey has done a Lego camp and half of Marine Science camp. The week he started his Marine camp they called and told me he was neutropenic so I had to pull him out and keep him home. He was quite bummed. Frankly so was I. I was looking forward to a week of exercise, some time to work, and some time to myself. So when I had to keep him home Wednesday onwards I was really upset too.

Amaey's long hospital days are almost sanctuary for me now. I have a day where I'm not running around. I can catch up on work, calls, and anything else that needs attention, like cutting my nails. Yup I do have a nail cutter and filer in my purse. On the other hand the hospital days almost worry me because any amount of exercise I might have done will go undone in one day because I will end up eating out, snacking on a cookie with my coffee and will probably be sitting on my butt for the 5-7 hours because I don't like to leave him alone. So weird that I think about all this but then this is my life now... so what do I do? I can't shove these thoughts, these selfish, worldly thought from my mind. They are just a fact of my life.

First week of summer break

The weather can get hot or cold and windy sometimes but the shah family is cruising along. Kids have been up at 9 and 10am, Have been catching up with their friends, long extended play dates, fun movies at home, burnt food from mom.

Today is fathers day and after a late slow start they are quite excited to celebrate it.

To dexamethasone and beyond!

Amaey's 7 day dexa pills in May became the busiest time for me. I went to Trader Joes or Safeway every other day. Not kidding about it. I could not believe it that my cart would be full everytime I went to the grocery store. Amaey was so frustrated that all he could think about was food. He would sleep with a big menu planned for breakfast, he would plan his lunch menu before getting up from the breakfast table, and scan the freezer and fridge for all his snacks.

He did try to go to school some of those days but it was hard for him. One day I went to pick him up at 10:30 after Apurva had just dropped him off at 8:45. He was curled on the floor of his class. He could not stand because he was starving.

Well, we are so glad that that is all behind us. Amaey had a procedure on May 25th and that marked the beginning of his maintenance treatment. Now he only has to go in the clinic for blood tests and not even stay for the results. we call it the in and out burger days. The hospital calls us with his lab results and then we can give him his oral chemo pills. This is a 5 week honeymoon period.

The icing on the cake was, Amaey got to attend the last 2 weeks of school. He got to participate in the art and science day that he absolutely loves about his school, he got to participate in all the end of the year festivities, he also got to go for a classmates b'day!! How normal is that? We were so happy for him. Bookending the school experience with homeschooling in the middle. He does not remember not being in school anymore. For him, he was at school the entire year. I love this short term memory children possess. I wish we had that too. I wish I could forget all that he went through this school year.

The last 2 weeks of Amaey being in school were wonderful for me. I was like a bird out of her cage. I caught up on life's finer moments and practical things. Got my car serviced. Got a haircut. Made a visit to the dentist. Bought gifts for all the events that happened in the year, like our neighbors newborn who is already 1, my friend Renata's 2nd baby gift, and I haven't even seen the baby yet, mailed gifts to my dear Carmen and her twins. I still have a long list.... The best was, walking into a spa first thing in the morning and getting a massage, extremely impromptu. They happened to have an opening and I jumped on it. Thanks to my sister who sent me a spa certificate I indulged. I caught up on work for Kids & Art, had lunch and dinner dates with friends and colleagues I so wanted to reconnect with.

All in all it felt like a normal life. I wasn't looking at my phone the entire time for emergency calls from the school. I wasn't canceling out from commitments at the last minute. I wasn't on high alert. Well, I was out and about doing things. I was relaxed, happy, myself.

We are looking forward to a good summer. I don't know what mood changes due to the meds will occur after the 5week honeymoon is over but I will think about it when i get there. Until then, bring in one more margarita won't you!

Status

Last few weeks have been quiet, busy, hectic, and restful at the same time.

Amaey has started his intense maintenance phase. We have to take him in every Monday. he gets a lab draw and based on his counts things proceed. Last week was round 1 and he got Vincristine, Peg and 7 days of oral pills of Dexamethasone. Sometimes I feel like we trade one monster for the other. This whole week if you see Amaey it is like you are watching a ghost. He is so tired, moody, and sad.

Luckily next week he only has Vincristine. It is the Dexa that drives him crazy. It is a steroid and chemo.

I finally got to catch-up on work. So much had piled up that I did not know where to begin. So many fires to fend with the students. I'm also re-writing a class and those deadlines had piled up too. 2 weeks of just sitting and working has helped. I'm finally caught up.

Arjun has had some really busy weeks too. He had state testing, Science Fair due, Social Studies paper, swim meet, and tabla concerts. I suddenly went full throttle on his life and I feel a bit caught up with him too.

We had a scare with Arjun, his urologist saw his routine ultrasound and wanted some more tests. He had to undergo a procedure on the 15th. We were really scared of the outcome. On the 27th he had another test and then we got to meet with his Urologist. Long story short, all is fine. He was born with one weak kidney and the doctor thought that the kidney was failing and we might have to remove it. We know that at some point in his life we might have to do this but as a team we were hoping that wasn't going to happen at this stage of his life. Luckily she saw no extra damage.

All I can say is- No one knows what the future can bring. Put your energy into now.

Etoposide

Well, this marks the official end of intensification.

Today we went in for Amaey's Etoposide. We also had a doctor meeting to go over the plan for the next 6 months. They had to hydrate him and give him pre-meds because he had a reaction to this drug. They also decided to administer this medicine at a much slower pace then usual. So our day started at 8:30 in the hospital and we did not get done until 5pm. At some point I had to leave Amaey alone and go pick up Arjun from school and bring him to the hospital.

Arjun was feeling sick, his head was hurting and he threw up as soon as I picked him up. Luckily I knew that he wasn't sick. This is his body's mechanism. If he has a cough or has eaten food that does not agree with him, he can throw up and in few hours he is as good as new. I was sincerely hoping that he was cleansing and not really sick, because he was in the hospital, in Amaey's room while Amaey was getting his chemo.

We finally drive home at 5pm, Arjun fell asleep in the car and when he woke up he was a new person. I was so relieved. I was also happy that Amaey did not get any reactions from the meds and we came home.

Amaey is home

Last hospital stay in the protocol is done!!

We are home and so happy that the stay did not drag more then planned.

I dreamt that Amaey had to stay for 4 more days and I jumped out of bed and touched his forehead to make sure he did not have fever. He was nice and cold and I went back to bed, fell sound asleep. This morning they came in with his levels and said he was good to go, of course it takes hours before they can finally set us free, but we were not complaining... we knew we were homeward bound.

Last night I did go to PF Changs while Amaey was in the playroom. Amaey wanted me to pick-up food for dinner. We watched the Food Network and ate our yummy dinner.

Methotrexate

We are in the hospital for Amaey's last hospital stay. He will get Methotrexate this time.

They are watching him very carefully and checking his sodium levels often.

So far they have started his hydration and around 11pm they will start his chemo which will go on for 24hrs.

Then we just wait for the chemo to clear out of his system before we can go home. Hopefully it is a simple in and out.

Arjun, Hetal, Amaey, and I are in the room watching Cody Banks 2. We are waiting for 6:30pm so that we can go upstairs to the playroom.

Arjun is on Spring break so it should be nice for Amaey.

School

Amaey went to his schools open house on April Fools day. He was so excited to be there. He had a big plan and this is what it looked like-

- Ma, drop us at school and look for parking

- Didi and I will first go meet My 3 K/1 teachers

- Then we will walk up to my class

- Go down to Gabriel's class

- Then walk over to Christopher and Elias's class

- Go to the art show

So I asked, how will I find you... no answer.

Finally, we did decide to meet at his class before he went galavanting around the school. It was really nice to see some of his assignments on display. What was most touching was to learn that every morning they still include Amaey in the roll call protocol. How amazing is that?

Also, they had a project called the missing person and the class got together and created a profile to fit Amaey. He is really lucky to have such amazing teachers.

Looking good

We went in for Amaey's CBC today and everything looks good. Now we just wait for them to call us on Monday to admit him for his Methotrexate.

This time his doctor does not want us to go to El Camino instead we will be at LPCH. They still haven't figured out why he got so sick last time so they want him under close surveillance and monitoring.

My niece is visiting from Florida so at the moment we are all looking forward to a good weekend.