New Beginnings: Am I ready for this freedom?

Surprise "Suite" Tickets to the Lakers Game!

It got better and better: Lakers goody bag from our friend Eric!

Your generosity really touched us. Thank You Eric!!!!

Family fun at Staples Center

Go LAKERS!!!!

All dressed up for Thanksgiving dinner with our L.A. family

A rare family photo

These boys spell T-R-O-U-B-L-E!!!

A day in the life of a SF 49er quarterback

It doesn't get any better than this!

Did you see that play??!!

Boys day out

First FULL day of school: December 16

Walking side by side with big brother

It feels so good to be back amongst friends!

We officially transitioned to UCSF last month. On Nov. 17 we had our first clinic visit with Dr. Cowan and I was completely blown away by the drastic difference of opinion amongst the various bone marrow teams. There is Dr. Prasad, who is ultra conservative, erring on the side of caution sometimes maybe a bit too much. There is Dr. Walters, who is also very cautious and "by the book". Now we have Dr. Cowan, who is also very seasoned yet completely liberal and holistic.

Jaden had labs drawn as usual. Dr. Cowan also wanted his own DNA samples for Jaden and Gia so he could run the chimerism at UCSF's lab. Jaden's sample was easy, just added to his routine lab draw. I was given a cheek swab kit and told how to collect cell samples from Gia's inner cheek lining. Let's just say it was easier said than done. I had her in her high chair and she still fought me. First I forgot to put my gloves on before I opened the sterile swabs and of course I opened the wrong end, lightly brushing my own thumb across the tip of the swab. Then as I collected the samples, Gia grabbed my hands, sucked on the wire swabs, and generally "got in the way" of my collection. I even emailed the team later to let them know I wasn't sure if the samples would be valid, but luckily they were fine.

Back to our first visit, Dr. Cowan was initially very cold. He didn't even shake my hand and I sensed some "we could have done this here" sentiment. Dr. Cowan asked why Jaden was still on immunosuppressants and I told him that Jaden's lymphocyte count had dropped to 22% at Duke. He looked puzzled and told me that in his experience the counts rebounded on their own over time, without immunosuppression. Jaden's lymphocytes were not the issue with CGD, so it didn't really matter if his own cells returned. The question was about living with what's called "mixed chimerism", or Jaden's body having his own and Gia's cells and their ability to coexist within him. "That was your concern when we spoke last time," Dr. Cowan mumbled, once again hinting that we were in a position that we were trying to avoid by going with UCSF for transplant.

He's right in a way. We loved Dr. Cowan and UCSF and almost did do the transplant here. Our concern was really with the reduced intensity conditioning regimen used. Yes, it's much easier on the child's body and there are less side effects of the heavy-dose medications. However, Dr. Cowan had also told us there was an instance(s) of children needing to be re-transplanted (i.e. getting a second transplant) because they did not engraft with this regimen. This was a chance we were not willing to take. Looking back, I can't image going through all of that (even if it's to a lesser degree the second time) over again. I had also checked with other centers and the experts had agreed that for CGD, fully ablative regimen (ie full dose chemotherapy) was needed in order for transplant to be successful.

We reviewed the med checklist and Dr. Cowan seemed surprised Jaden was still on all these meds. I asked about Azithromycin and whether that could be removed. I told him about CHO and Duke and the differing opinions about Jaden's chest CTs. Dr. Cowan just looked at me and said Jaden was on such heavy-duty medications with things like Voriconazole and the immunosuppressants that, essentially, the little extra bit of zithro he was getting should be the least of my worries. We then talked about Jaden's port. "Does he not have good veins?" asked Dr. Cowan. No, I think his veins are fine. Again, Dr. Cowan seemed to scowl. "Then there's really no reason for him to have a port". I was really starting to question all of our decisions at this point.

We then spoke about our upcoming trip to Los Angeles for the Thanksgiving holidays. I confirmed that it would be okay for Jaden to go, especially to the Thanksgiving dinner itself, which would mean there are lots of people around. I asked about the protocol for emergencies. What symptoms should I look for? Do I call UCSF or Children's LA directly? Dr. Cowan glanced over at me and told me that with a port, the first thing anyone would do is a lab draw to check for infection. After all, it is a foreign object in Jaden's body and infections were not out of the question. Once again, I thought about if we had done the right thing by leaving the port in for so long. Dr. Prasad had told us that many people have it for years and it's not a problem. I now thought about all Jaden COULDN'T do because of his port, or the potential risk of falling on or having impact to it.

After doing a physical examination and telling me that Jaden looked great clinically, Dr. Cowan left the room. I finished up with Linda, the nurse practitioner and we headed back home.

That weekend we left for our week long trip to LA. We were all looking forward to it, but I was also apprehensive about Jaden being surrounded by so many kids (and adults). I hoped and prayed that he'd be okay and we began our 6 hour road trip down Hwy 5.

We all enjoyed ourselves, but Jaden especially had a blast. It was so wonderful seeing him amongst kids his own age, laughing and playing. We literally had to drag him home every night so he could get a little rest.

As if being with his cousins wasn't exciting enough, Jaden's bhua (aunt) worked with the local Coca Cola rep to secure Lakers basketball tickets for the boys. She surprised them the day after we arrived and the boys were thrilled. I was so touched by Sabrina's gesture and couldn't believe Eric, the Coke rep, had provided us with tickets in their suite at Staples Center to see the game on our own. I was concerned about Jaden being in a stadium and this was the only way he could go see his beloved Lakers play. Eric assured us the suite would be there for our use. He could conduct his business with Gunu bhua while the kids enjoyed the game.

Needless to say, the suite at Staples Center was amazing. Eric had gone out of his way to take care of us. He gave Jaden a bag full of Lakers merchandise. He had asked Gunu ahead of time what Jaden liked to eat and then ensured that the suite was well equipped with Jaden's favorites: chicken nuggets and lots of COKE! I was so deeply moved by his generosity. Eric told me he had been following Jaden's journey via this blog and wanted to meet him in person. I think Jaden is the one who lucked out and could see for himself the impact of the kindness of strangers. Although, after our evening with Eric, he is more like a member of our extended family now.

By the time we returned, the lab results from UCSF had come in. I had asked to be notified as soon as they were available. Jaden also had a cortisol level drawn before we left since he was basically weaned off of hydrocortisone. Unfortunately, the labs showed that Jaden's body was not yet making enough of this hormone so he was put back on hydrocortisone at "physiological dosing", which was 7.5mg three times a day. I was upset about this potential set back, but Dr. Cowan assured me Jaden would rebound in time.

The best news came a few days later. I received an email from Dr. Cowan about Jaden's immune function testing. Most of the results were within normal range. Dr. Cowan recommended removing Jaden from isolation. What? I went back and read the sentence over and over again: "His T cell immunity however is 59% of normal control with > 1000 CD4 cells, which as far as we are concerned is normal and means you can take him off isolation completely and let him go to school." Take him off isolation completely? What do you mean? He can be around people? He can be in groups? I just couldn't believe it. I couldn't grasp the concept that Jaden was no longer restricted to the house and a few close friends.

Around that time, Guri got his hands on a set of 49er tickets. My first instinct was "Jaden can't go to a stadium with a bazillion people!" Then I thought a minute. "Can he?". I shot off an email to Dr. Cowan and his response was "Yes!". No, I don't think you understood me. Can Jaden go to a major football game, tailgate in the parking lot, and sit shoulder to shoulder with a crowd of people--none of whom I have control over as far as health is concerned? Again, Dr. Cowan assured me Jaden would be fine. "You have to start somewhere" was his response. Really? SOMEWHERE? How about a little gathering of friends? How about school for 2 hours instead of 30 minutes? That's "somewhere". Throwing him head first into a stadium of germy people, is not merely "somewhere"! I had to regroup. Was I keeping Jaden home to protect HIM or to protect myself ? After hyperventilating for a while and having some anxiety attacks, I decided to let him go. I did give him a mask, just in case someone coughed next to him.

The boys had a blast. Jaden went with a group and they really enjoyed themselves. I was so glad he had the opportunity to enjoy a real football game, but I also was very nervous about the aftermath. I almost secretly waited for him to get sick. Days passed. Nothing happened. No fever. No rash. No cough. Just a little sniffle here or there, but nothing major. Phew! Okay, we got through this event. Let's not tempt fate. Keep it on the down low for a while, will you buddy?

I decided to let the school and his home-school teacher know that Jaden had clearance to return to school. However, I wanted to wait until our clinic visit with Dr. Cowan on 12/15. I wanted to get clarification on immunizations, port removal, activity levels and a thousand other topics related to returning to "normal life". Guri and I discussed his return to school and thought Jan. 3, 2011 would be a good time. It would be the first day back after the winter holidays and a new beginning of sorts. Jaden could start fresh. No point sending him with only a week or so left of school and then having him get sick. Let's wait until the visit with Dr. Cowan.

In the meantime, Dr. Cowan had Linda fax over the accelerated immunization schedule for Jaden. With his cells brand new and completely replaced, he would have to be re-immunized to be protected. Essentially, he would have to retake the shots he was given for the first 5 years of life. Luckily, it was a few to start: DTP, Hep A, Hep B, and another one. I reviewed the schedule with Jaden's pediatrician, who also wanted to add Prevnar and Hib. Dr. Cowan agreed and we had a plan. We did have to get pre-titers so the doctors could gauge how well Jaden's body was producing the antibodies once he received the vaccinations. Since Dr. Sachdeva did not have a lab in his office, I suggested we wait a week until Jaden's next clinic visit and just draw all the labs at the same time.

The big day came. December 15. I had so many questions in my head, I could barely keep them straight. Add to that the frenzy of the last week of school before the winter holidays and you can imagine the chaos. Heritage dolls to make, Heritage Feasts for which to bring food at school, gifts for teachers, nannies, and everyone who had touched the kids' lives to date. Of course there was the paired down Christmas gifts for the kids as well.

I guess I should mention I had a cosmic meltdown with the boys and cancelled Christmas. I was so livid about the lack of listening, the constant horseplay, the running/chasing/teasing/screaming that I just lost it. The outburst took everyone by surprise, including me. Before I could retract them, the words leaped from my mouth. Uh oh? Did I go too far? Were they really THAT bad? No, they are good kids. I'm just old and tired at this point and completely lacking patience. Now what do I do? I called Guri and told him about my unraveling with the boys. There was silence on the other line for a few moments and then a quick "if that's what you think needs to happen, I guess that's what we'll do." I could sense the hesitation in his voice. He wanted to support my decision, but he also thought I had lost my marbles, AGAIN. With that Guri told me he had to get back to work. Nice save...

We ended up talking about it later that evening. What was my objective of taking Christmas away? Well, the kids already have a ton of stuff. They don't seem to appreciate anything they have and are constantly losing things. We need to give back and teach them to do the same. Moreover, I wasn't happy with the curt, rude, snotty responses I was getting from them lately. They have no respect for their elders. This will teach them a lesson.

Will it? Guri asked. Did YOU appreciate what you had when you were 7 or 10 years old? Were YOU involved in charity events and handing out blankets to the homeless on the street corner? Do you even REMEMBER life at 7 or 10 years old? It is all about ME at that stage. They aren't thinking about how to save the world or feed the homeless, they're thinking about that new Xbox game their friends have and they don't! They are just kids. They're supposed to be selfish at this age. They will learn to give back over time. They will learn to give back by watching US and learning from what we do.

Really good points. Damn, I hate when my husband whips out the wisdom. Maybe I do expect too much from them. Maybe it's MY issue, not theirs...but, that is a therapy session I will end up paying someone a pretty penny for in my later years. Ultimately, we decided that we would get a tree and put up decorations. The kids could exchange gifts amongst themselves, but we would not give them gifts. Instead, we would spend their weeks off creating family experiences: visiting museums and parks, looking at holiday lights, and generally bonding as a family. Honestly, at that point, I was convinced Santa would not be visiting our home. Now, I'm not so sure the little guys deserve such punishment. It's such a thrill for us to see them run downstairs on Christmas morning and rush to their stockings. The house is filled with laughter and squeals of joy. Do I really want to take that away from them? It's our first Christmas together as a family again. It's Jaden's first real holiday after transplant and after being home. You see where this is headed, don't you? I better get to Amazon.com while I still have time!

Needless to say our guys did not take the news well. Experiences? We go to San Francisco all the time! You're not giving us anything? But you are the ones that give us the GOOD stuff every year! Yes. You heard us correctly. We will go to Union Square and see the holiday decorations. We will go to Christmas in the Park in San Jose and enjoy the displays. We'll drive through the sound and light show at Vasona Park and it will be beautiful. You will enjoy yourselves and appreciate every moment with us. Even if it kills you!

Oy vey, I digress again. Those that know me well can tell you how often I switch tracks and abruptly start/end conversations. That's because I'm having a thousand conversations in my mind at the same time. I just happen to let you in on a few of them now and again!

Getting back to Jaden and school. After our appointment with Dr. Cowan and the "all clear", Jaden wanted to go to school right away. Really, Jaden? It's Thursday tomorrow and you're getting your port out on Friday and then the 2 week winter break begins. How about we just hold off until after break and you can go full time then? As much as I reasoned, Jaden wanted no part of my waiting game. He wanted to go back to school immediately, even if it was only for a day.

Thursday morning came and Jaden was thrilled to bits. I don't think he slept much the night before. He was dressed and ready to go by 7:15. I gave Devin some pointers on showing his little brother around campus. "Can you show him where to line up? Can you tell him the routine in the cafeteria?" I wanted to make sure Jaden didn't feel lost on his first day back. Ultimately, I decided to walk the boys to school, which is just up the street. It was the most adorable thing. Jaden had his backpack on and was just bouncing with anticipation. Devin was cool and calm and giving Jaden the rundown. Gia just wanted to get out of the house for a change! It was a bitter cold morning but we all walked to school. I felt a few tears well up as I walked behind the boys. Oh no, this could be bad. Not now...

We got to campus and I showed Jaden where he would line up with his class. The grass was covered with frost and Devin wanted to take his bro "skating". All the kids were slipping and sliding around on the field. It was so good to see Jaden out amongst his peers. Soon Devin found a friend and off they went. Jaden ran back to my side. I could tell he was a little nervous. I decided to walk him back to his line to see if any of his buddies had arrived. THOMAS! There's Thomas, Jaden! Jaden ran over and high-fived his buddy. Soon he saw a few other familiar faces and he was right in his element. I watched from a distance and felt the tears creeping back. Hold on, not now...

Mrs. Johns came to get her class and gave me a huge hug. "I'm so excited Jaden is back!", she squealed. "I'm not ready," I blurted out loud. "Don't worry, I'll take good care of him." I knew she would. Mrs. Johns was fabulous. The best teacher their school has, hands down. She has been incredible through this journey, doing anything and everything to ensure Jaden felt like a part of the classroom community, even when he was home-schooled. She emailed me constantly and spoke with me about what she could do to help, how she could get Jaden feeling like a part of his class. She had his drawings and schoolwork up on the wall and spoke to the class about him often. She Skyped with us from home, offered to stay after to meet with Jaden one on one, and essentially was a second mom to him in the classroom as she wiped down his desk with Lysol and ensured he wore his mask. I LOVE MRS. JOHNS! There, I said it.

Mrs. Johns greeted Jaden and led her class to their room. Jaden turned around and waved and I could see the sheer joy in his face. He was giggling and playing with his friends. And then it came. First as a slow wave and then a complete flood of emotions. I couldn't hold the tears back any longer. I was so happy my baby was "normal" again. It had been a long time. He had been through so much. I felt the surge within me and knew I had to get out of there before I fell to a heap, sobbing right there in the middle of the playground.

I grabbed Gia's stroller and quickly headed home. I had a few short outbursts on the way home, but couldn't fully release since I was in public and didn't want the neighbors to think I was some crazed lunatic. It was really tough. I knew I had to let all these feelings out. I had to let go of the pain, the anxiety, the apprehension. Jaden will be okay. He IS okay. It's time to let him get back to his friends, his life, his routine. He has been captive long enough.

I went back to pick Jaden up from school and he was BEAMING. He came out with Thomas and they asked to have a play date. Sure, Jaden, no problem. I'll call Mrs. Vaughns and set that up. How was your day? Jaden couldn't contain his excitement. "It was the best day ever!" Jaden proceeded to tell me about school and his classmates and the cafeteria. I asked him what he chose for lunch and he said "I had all my food groups, mom". Jaden then described the meal: corndog, chocolate milk, carrots, and .....GRAPES! "I knew you asked me not to rush into everything all at once, but I really wanted them. So, I figured I'd just eat them and deal with YOU later!" I wanted to laugh out loud. I had told Jaden that although he could do whatever he wanted and eat anything, that he should take it slow. Let's not go crazy. Let's try one thing at at time. I was thinking that if there were any issues, I would then be able to trouble shoot and figure out what caused it (again, waiting for something to happen).

The best part of the conversation came when we were home. Jaden was starting to play video games when he shouted out. "Mom, I think I was angry and rude because I couldn't play with my friends. I was bored. I'm going to be a good boy now!" I was so shocked by his own admission, which made perfect sense. I'd be crabby and bitter too if I was isolated for such a long period of time. Okay, maybe I should say that I'd be MORE angry and bitter ;-). Jaden walked over to me and gave me a big hug and we snuggled for a long while. I couldn't wait to see him back in his routine once the winter holidays were over.