The More Things Change, The More They Remain The Same

Halloween Parade at School

Luke Skywalker Pilot, Darth Maul, and our Little Devil!

Hitting the streets of San Ramon

"It's mine, all MINE!!"

Taking inventory of the goods!

Back to Tae Kwon Do

It was fun while it lasted!

First school field trip to Safeway- the refrigerated truck was Jaden's favorite part!

New cashier on check stand 4!

Finally-the first baby tooth to go!

Enjoying family traditions at the Sikh Temple

Diwali Celebrations

It's been quite a while since I posted and I wish I could just tell you that it's business as usual. However, just when I think everything is stabilizing, it changes. Which, in a way, is the new norm.

The biggest news is my recent decision to fire the transplant team at Children's Hospital Oakland. We had originally selected this facility as our follow-up center based on it's proximity to our home (only 30 minutes barring traffic) and the fact that Jaden's Attending at Duke had a "close personal relationship" with the director at CHO. Unfortunately, this relationship backfired as the team at CHO didn't seem to want to collaborate with Jaden's team at Duke. Moreover, it seems that Dr. Walters didn't really appreciate my active involvement in Jaden's care. If you know me, you know this is not negotiable!

It started with my frustration with the lack of communication between departments. I had taken Jaden in to see Dr. Hardy, his pulmonologist, a few weeks ago on a Saturday afternoon no less. When we arrived, I soon realized that Dr. Hardy once again did not have access to Jaden's recent PFTs or his High Altitude testing, all of which she had ordered herself. So, after a quick physical exam and a thumbs up from Dr. Hardy that all looked well, we had no choice but to head back home. I was so frustrated I thought I was going to blow my lid. I had come in on a Saturday--Dr. Hardy had invested her precious Saturday clinic time--for nothing! I walked away not knowing any more than I had coming in to the appointment. When I questioned Dr. Hardy about the disconnect, she told me that although the information was in the system, she did not have visibility to it. Apparently the technician doing the test first signs off on the report and then it goes to the Fellow, who signs it and send it off to the Attending. If the Attending has not signed off on the report, no one has visibility to it-which is what happened in our case. I could not believe the inefficiency in this place.

To top things off, Jaden had a few sniffles and Dr. Hardy scared the &*%$ out of me by asking all sorts of questions and reminding me about the whooping cough epidemic. She told me to ensure Jaden had his DTP shot IMMEDIATELY and that I should double up on his Azithromycin if things didn't improve in a few days. She put me in such a panic that I cursed myself for being too lenient with Jaden. Maybe I shouldn't have let him go to school so soon, even for the short time frame that he participates. I was ready to call my pediatrician and set up the DTP shot and then I thought that I better cross check this with his bone marrow transplant team at Children's Oakland. I emailed Sherrie, our nurse practitioner, that night and asked her for her recommendation. Was it okay for Jaden to get the DTP shot? I needed to know immediately. My plan was to get this done first thing on Monday morning. As usual, I put a sense of urgency in my message and pressed her for an answer right away.

The answer I received both shocked and infuriated me. Sherrie told me that the DTP wouldn't help Jaden since he's on immunosuppressants. In essence, it would do him no good. She also didn't seem too concerned about the sniffles and said to wait and watch before making any medication changes. Once again, the right hand was not talking to the left. I was getting very frustrated by having to orchestrate all this communication, which in my mind, should be seamless.

But I guess the breakdown started well before my appointment with Dr. Hardy. Last time we were in clinic, Dr. Garcia (one of the Attendings and the doctor we seem to see most often in clinic) reviewed the usual information with me. He mentioned that flu shots would be given to patients in the October clinic. So, it's okay for Jaden to get the flu shot this year? He nodded and told me they would have a supply in by the time I came back in October.

On my way home, I remembered I had already scheduled Devin and Gia for their flu shots with their pediatrician (mind you this is in mid September). Why wait until October? It takes a month or so for the shot to take affect, so the sooner I get Jaden the shot, the sooner he will be protected for the winter season. I called Sherrie and left her a voicemail asking if it was okay for me to move forward with Jaden's flu shot that week and Sherrie later confirmed to me that it was fine.

Coming back to Jaden's October clinic visit. I was elated that we would be seen by Dr. Walters himself. He is the director of the program and rotates through the clinic only so often. This would be the second time we saw him since we returned home last April.

Dr. Walters is a man of few words and I'm the exact opposite. I always have a lot on my mind and am not shy when it comes to sharing my opinion. I started by asking Dr. Walters how things were going. After the usual pleasantries, I mentioned that I was frustrated by the lack of communication within CHO. That was it. Dr. Walters immediately started off with "It seems you're not happy with us. I'd be happy to transfer Jaden's care..." SAY WHAT? Are you kidding me? Did I SAY I wanted to transfer his care? I was merely mentioning a breakdown in communication within his organization and seeing how he's the head of his department, I thought he may want to know about my frustration and what I was experiencing from a patient's perspective. Man was I wrong! He had no desire to hear what I had to say. I felt as though he had already labeled me a P.I.A (Pain In the Ass, for those not familiar with "medical" terms) patient and wanted nothing more to do with me or my son's care. This of course infuriated me even more.

After many moments engaged in what I call "educated banter", where we were both expressing our opinions in a very formal and "professional" manner. Dr. Walters: point. Kiron: counterpoint. The exchange was getting ridiculous and I found his demeanor to be both curt and condescending--two qualities I don't particularly care for. In short, he mentioned how I had gone on my own to make Jaden's endocrinology treatment plan recommendations-going as far as to ask for a transfer to Stanford (this is true, but I just did not feel comfortable with our endocrinologist at CHO and Jaden's care is much too important to me to worry about stepping on toes, even if it happens to be that of the director), gotten Jaden a flu shot even though it did him no good because of the immunosuppressants (I beg to differ--that's not the information I received from YOUR team member!), and on and on and on. This is ridiculous. I wanted to change the tone of the conversation, so I tried to turn things around by asking how I could help the situation. Dr. Walters told me there was a records department and I was more than welcome to retrieve all of Jaden's records and take them from specialist to specialist. Are you HIGH? This is not a simple procedure we're talking about. My son has gone through a stem cell transplant, a complete "system reboot" if you will. I couldn't even imagine the stack of documents and films associated with his "records" at this point. I was LIVID! I wanted to literally wrestle the doctor to the ground at this point and had to bite my tongue and hold myself back. Forget it. It's no use. Why waste my energy and breath? I left feeling enraged and misunderstood.

On the drive home, I replayed the conversation in my head over and over again (you'll notice that I have many an epiphany while on the road!). Then it dawned on me. Wait a minute. He's right! I'm NOT happy here and I DO have a right to go elsewhere. As a matter of fact, as the advocate for my child, I'm going to exercise that right--TODAY!

As soon as I got back home, I spoke to Guri about this most recent confrontation. He was surprised I held back. He said if he was there, he would have not been so polite and "laid into the man"! No point. I don't think it would make a difference. I wanted to do what was right for Jaden and this place certainly was not.

I called UCSF and found out what I needed to do to initiate the transfer. They wanted a referral from Duke. I emailed Dr. Prasad and gave him a quick update. I also emailed Sherrie and told her I was going to transfer Jaden's care to UCSF and to ensure Dr. Cowan at UCSF had ALL records for Jaden. She agreed and wished us well.

This setback actually turned out to be a great opportunity to reconnect with Dr. Prasad and get his opinion on Jaden's treatment plan. Since Jaden was in between centers, Dr. Prasad felt completely comfortable getting involved. Technically there was no one directly involved with managing Jaden's care at this moment, so he wouldn't be stepping on anyone's toes. When I told him that I wished we could have stayed at Duke until Jaden was completely recovered, he jokingly told me to move back to North Carolina. We would have loved to, but it just wasn't feasible. I couldn't imagine splitting up our family again or being so far from those that we love so dearly. Guri even suggested we just take Jaden to Duke more frequently and let Dr. Prasad manage his recovery. Dr. Prasad told us he would love to see us more often, but we needed to have a local bmt center for Jaden in case of an emergency. It all made sense, but we so wanted to be back at Duke among familiar surroundings, where the team knew Jaden (and our family) so well.

As is my nature, I drafted a very detailed message to Dr. Prasad. I wanted to give him an update on every aspect of Jaden's current treatment plan, essentially, a data dump: where he was from a pulmonary, endocrinology, and bmt standpoint. Dr. Prasad must have been amused by my essay on Jaden's care, because he sent me a quick "my typing skills are not so good as to respond. will call you tomorrow" response. We both had a good chuckle about it the next day. I told him my emails were not Blackberry compatible--they are not short and sweet, so using a PDA to read/respond isn't always an option!

Dr. Prasad asked me for an updated medication list and we reviewed all the points in my email. He started off by apologizing for things not working out at CHO. I knew Dr. Walters was a "personal friend" of Dr. Prasad, so I wasn't about to go off on a tirade. I merely mentioned that I should have gone with my gut instead of going with the center that was closest to home. Done. Move on...Dr. Prasad said he would speak with Dr. Cowan and set things in motion.

Even though it had been only a few days, it felt like an eternity. I was so stressed to have Jaden's care in limbo. What if he got sick? What if there was some other emergency? Where would I take him? I didn't want to take him to CHO and he was officially out of their system anyway. On the other hand, Jaden was not yet seen by Dr. Cowan, so UCSF wouldn't know what to do with him. I crossed my fingers and prayed daily that Jaden would be okay. I checked in with Dr. Prasad, who was traveling as usual and unable to speak live with Dr. Cowan. He finally sent me an email letting me know that Dr. Cowan would be happy to take over Jaden's care. Phew! Now it was just a matter of getting Jaden on Dr. Cowan's schedule. I also had to get him transitioned to an endocrinologist soon since he would officially be OFF hydrocortisone in another week or two. It was also coming up on Jaden's next clinic visit and labs needed to be drawn as well. I sent off a quick email to UCSF and begged for an appointment next week, before we left town for the Thanksgiving holidays.

Oh, did I mention that I decided to go back to the office during this time? So on top of the usual medical headache, I was up to my eyebrows in resumes from potential nannies and already starting to transition (or throw myself head first) into my job responsibilities. In a way I think my sister, Rita, is right. I'm so used to having fifty things going on at the same time, that if there's ever a "free" moment, I have to ensure I'm overloading myself. I thrive in the chaos.

Actually, work is my savior. It allows me to escape the mundane routine of feeding, bathing, and generally keeping the kids out of trouble. I try not to think about doctors and medical visits and my responsibilities as a parent. It is to me what "L.A." is to Jaden. An escape. For a few hours a day, I can be creative. I can learn new things and use my mind in a different capacity. I can have conversations with other adults about things that have nothing to do with school, who smacked whom first, the mess that is perpetually our family room, or the sometimes unbearable noise level... I only have to take care of and feed one person (okay, maybe two people--me and Guri)!

Of course the trade off is that my work load has quadrupled. I go from rushing to get the kids fed and off to school, making sure Jaden is doing his homework, Gia is not destroying or abusing anything or anyone, making lunch for me and my partner in crime, to my long "to do" list at work, only to rush home and start the after-school activities, dinner, etc. Luckily, I'm blessed to have a true partner who comes home from work and jumps right into the mix.

But enough about me. Let me update you on my little warrior. Jaden had a fabulous Halloween. He chose to be Darth Maul from Star Wars the Clone Wars and was even allowed to participate in his school's Halloween parade since it was outdoors. This was a BIG deal to him. I ordered his costume online and it came without a mask, a key element in the Darth Maul costume. I was so afraid that he would be devastated, especially since it was the night before the big school parade and class party. I was expecting a major meltdown, but was completely surprised when Jaden looked at me and said "Don't worry about it, mom, it's no big deal." That's my boy! He marched with his classmates with his head held high, without his costume mask but WITH his "duck mask". He didn't seem to care if anyone stared or gave him curious glances. That is Jaden. That's what's so wonderful about him. He is so confident (sometimes a little too much even!) and knows what he wants and how to get it. I'm so proud of my little guy! Luckily, the replacement mask arrived in time for the REAL holiday and Trick or Treat time.

Jaden went Trick or Treating with his dad, brother and baby sister. He was so excited and wanted to go around the whole neighborhood. Gia also loved every minute of it. She would be ahead of the boys, running to the front door and learned a new word -"candy"- that day. Guri brought her home after a quick circle around our area because she was just too hard to manage ;-). The kids each came back with a big bag of loot and dumped it in the middle of our family room to take inventory.

Jaden participates in a few other activities during the week. He is home schooled by a wonderful teacher twice a week. He also goes to Music and Writer's Workshop, each of which is 30-40 minutes, every week. So, at least he gets some face time with his classmates 2-3 times a week. Mrs. Johns has been wonderful about helping Jaden feel like a part of her class. We Skype with them once a week and Mrs. Johns is so good about asking Jaden if he is following along, just as if he was truly sitting in the classroom. Jaden was also allowed to go back to his Tae Kwon Do training, although it was short-lived. I really pushed for him to do this and we finally made it work by taking him to a location that only had 3-4 other students. However, with flu season approaching and the fact that it's impossible to have a mask on during class, this idea was nixed after the first two weeks. Better to be safe than sorry. Jaden also continues his Kumon studies, although I take him to the center well before all the children arrive from school. He's able to do much of the work in the center itself, just as he had prior to transplant. If kids start coming in, he puts his mask on and if it gets really crowded, Mrs. Zamani has him work outside on the table and chairs in front of the center. I had also asked the team at CHO and was allowed to escort Jaden on his first school field trip to the grocery store. Not very exciting by any means, but another step closer to integrating with his class. Jaden was very good about wearing his mask the entire time and I watched him like a hawk!

Along with the physical changes with the addition of the activities, I'm starting to notice some mental breakthroughs as well. One night while Jaden was at the dinner table, he gazed up and said "I'm glad I'm not in the hospital anymore." It caught me totally by surprise. Jaden had not mentioned the hospital, transplant, or his ordeal at all until now. "I'm glad my family was there with me." I looked up at him just as tears welled up in his big brown eyes. I had to fight the waterworks myself. I was so glad that we was finally opening up. I wanted to encourage the discussion, not turn it into a sob fest. I started to probe some more in hopes of getting the dialogue going. I asked if he remembered transplant. Jaden nodded his head. He seemed to be thinking of something and not in the present moment at all.

Later that night as I was giving him a bath and continuing the discussion, Jaden mentioned how the worst part for him was the pain in his back and side. I remember it all too well. It was excruciating. Jaden would scream uncontrollably. The doctors were perplexed and even went as far as to say it was "in his head" since they couldn't find a cause or any indication that there was a problem. Ultimately, they determined that it was a side effect of one of his medications (Foscarnate). This med had enlarged his kidneys to the point that Jaden screamed the most ear-piercing scream you have ever heard.

Jaden went on to tell me the next worst part of transplant was the painful urination and the "bloody pee". Yup. I remember that as well. That was the first side effect of transplant Jaden experienced. He had nearly sailed through the transplant itself with none of the usual symptoms--no mouth sores, no bone pain, no engraftment rash. We were actually concerned that he may NOT have engrafted. I was trying to be ultra-efficient by packing up everything in his hospital room the night before discharge and sending it all back to the apartment. Then it hit, in the wee hours of the morning. The morning Jaden was going to be discharged. We went from being sent home in record time (not yet 30 days post transplant) to being held captive on the unit for several more months.

Ms. Powers, Jaden's home-school teacher, and Sophia (our nanny) also tell me that Jaden is starting to open up more with each of them about his time in the hospital. I'm encouraging them to let the communication flow. I also suggested Ms. Powers encourage Jaden to write in his journal about his feelings. This could count as his writing assignments and also be very cathartic for him. I know this blog has been a tremendous source of release for me.

In other big news, Jaden lost his first tooth in mid November. He was so excited, especially when he found the dollar under his pillow from the Tooth Fairy. "See, I KNEW the Tooth Fairy was real!". I gave Devin a stern glare in hopes of keeping him from bursting Jaden's bubble. Jaden still believes in lots of things, Santa, the Tooth Fairy, the Easter Bunny. Devin seems to be questioning everything nowadays, including why we celebrate Christmas and Easter when we're not Christian. Hey, buddy, keep it down! The rest of us actually enjoy these traditions, even though there are no religious ties to them. So, as they say, WHEN IN ROME...

Getting back to our traditions, we celebrated Diwali (festival of lights) by going to the Gurdwara (Sikh temple) and lighting some candles. This is one of the few Indian customs I've been able to maintain with the kids year after year and I think they actually look forward to it now. I got very emotional driving to the place because the last time we were able to go as a family was just before we left for Durham. We asked for God's blessing and all did a special prayer for Jaden to successfully make it through transplant and be free of CGD.

Even sitting in the prayer room was emotional. When I went to "matha tek" (bow in prayer) with the kids all around me, I just counted my blessings and thanked God for getting us to this point. We have come a long way and the journey is no where near over. I just wanted the strength to keep pushing through and wanted Jaden to be back to his "normal" routine as soon as possible. I also thanked God for our newest little addition, who was completely oblivious to everything going on around her and proceeded to scream and dance in circles to the rhythm of the kirtan (devotional hymns). She also ran back and forth screaming "DADDY!" between where Guri was sitting in the "male" side of the room and where I was sitting. We could only sit and listen for about 30 minutes before the room started to fill up and we had to leave. Diwali is a big deal and the crowds can swell to hundreds, so I knew we had to get Jaden out of there before things got too crazy. I prayed that we could all return next year, during "peak time" in the evening and really enjoy the festivities with our family.

I hope Jaden has the opportunity to enjoy many more holidays and family gatherings. I hope he can soon return to school and his "normal" activities. There is so much I want to do with him, with all of us as a family. I can't wait until Jaden is able to participate fully. I know that day is coming!