Sunday, December 27, 2009

Day +94 ('Bits and bobs' from the past week ...)

Monday - Hunter had a one on one physical therapy session with his primary physical therapist. Apparently, he pays better attention when his parents aren't around. Go figure. After his appointment we went to visit Ashley. Ashley's dad, Bill, threw together a hospital lunch for Hunter so we could prolong our visit. Nothing beats chicken strips with mustard, pretzels, grapes and orange juice in Hunter's mind!

Tuesday - We met with Hunter's immunologist, Dr. Ochs, regarding Hunter's current immune function, which isn't much, and "the plan" for the next nine months. Hunter will continue to receive IVIG until he is off immunosuppressant drugs, the timing of which is still to be determined. They will further evaluate his immune system then.

Wednesday - I attended a Long-Term Follow-Up class, time well spent. Hunter enjoyed himself in the afternoon running the halls with his new friend, Elizabeth. She is the three year old sister of a little boy here in the transplant apartment building.

Thursday - Hunter had another physical therapy appointment. He is making good progress, seemingly better than before transplant. He's certainly faster! The physical therapy team has done an excellent job with Hunter. We couldn't be more pleased.

Friday - Christmas! Hunter woke up to the presents Santa left for him. Can you say spoiled?! It was fun to sit around and watch him focus on the one toy we never anticipated him focusing on, a pint-sized Target semi. Who needs a Buzz Lightyear action figure or a remote control Caterpillar dumptruck? The highlight of our day was our trip to visit Ashley and her family. We were thrilled to see Ashley walk out of her room in a new Christmas sweatsuit and pick up Hunter for hugs and kisses.

Saturday - We spent our time lazing around the apartment in the morning. However, in the afternoon, we took a trip to Candy Cane Lane, a small neighborhood filled with Christmas lights and decorations. We had a nice time together and actually took a second trip through because it was so well done. Unfortunately, Hunter did not fully realize this would be his first night without his beloved pacifier. He cried, screamed, whined and tantrumed his little heart out. After forty-five minutes he let out a big yawn, had a brief discussion with himself about where his pacifier could possibly be and finally fell asleep until morning.

Sunday (today) - Hunter had an impromptu playdate in the hallway with Elizabeth. They ran each other ragged, and subsequently, he had an amazing nap! This afternoon one of our volunteers, Allison, entertained Hunter for almost two hours, allowing us to catch our breath and relax. We are very lucky to be matched with two involved and thoughtful volunteers. Tonight is night two of "Operation NO Pacifier"! I have to admit it's not easy blogging with an agitated two and a half year old in the next room. I gave it my best effort though!

We have plenty more appointments this week. Hopefully, we'll hear good news before it is all said and done. Wishing everyone a belated Merry Christmas!

Monday, December 21, 2009

Sunday, December 20, 2009

Day +87 (Tidbits from the past week ...)

Tuesday - Hunter was taken off nightly hydration. What a difference a good night's sleep makes, not worrying about leaky diapers or beeping alarms!

Wednesday - We received a visit from a nurse who has become a dear friend. She even brought us dinner!

Thursday - Hunter participated in a media relations photo shoot at the hospital highlighting the physical therapy department. He certainly enjoys being in front of the camera and the center of attention.

Friday - Our family paid a visit to our friends Ryan, 2, and Ashley, 17, who are currently inpatient on the unit. They both looked great and we pray for them daily.

Saturday - One of our Side-by-Side volunteers, Lynn, and her husband came over to entertain Hunter for two and a half hours, allowing us to have an early dinner at California Pizza Kitchen.

Sunday (Today) - Hunter had his first playdate since his transplant with another immune suppressed transplant patient, Zyreal, who lives in our apartment building. I think they wore each other down and wore each other out. It is such a good feeling to see Hunter having so much fun and our not worrying constantly about bumps and bruises.

Wednesday, December 16, 2009

Day +83 (Christmas in Seattle ...)

Hunter's dental exam went well yesterday. The doctor found no signs of GVHD in Hunter's mouth. Similar to his eyes, it will be a matter of continued and diligent observation over the course of his growth and development. Unfortunately, our departure conference is not scheduled until Monday, December 28th. Sadly, we will spend Christmas in Seattle without Harper, difficult to digest. Hunter's Attending Physician agreed to begin Hunter's steroid taper tomorrow so we can deal with any potential issues prior to our conference. As we will have several details to take care of after the 28th, including Hunter's Central Line removal and a nurses' clinic, it remains to be seen if we will make it home for New Year's Eve. Even though next week is a short week due to the holiday, we will have an immunology meeting to take a closer look at Hunter's immune function results. Also, we will meet with members of the Long-Term Follow-Up Team, who will give us specific instructions on how to care for Hunter in the coming months. Ultimately, all of these things will make our life easier once we return to L.A.

Monday, December 14, 2009

Day +81 (Good news so far ...)

Hunter's skin biopsy last Thursday went very smoothly. The procedure was quick even though he underwent anesthesia. Hunter did a great job of remaining calm when he entered the room. Thankfully, we were able to stay with him as they put him under. Apparently, Hunter woke up trying to go about the business he was attending to prior to the anesthetic, not realizing he was drastically impaired. We were in the waiting room, a sliding glass door away, when Hunter came to and heard the nurse say, "My, he wakes up quickly." We went in the room to find him bouncing off the rails of the operating table like a TKO'd prize fighter. Hunter's immediate concerns were the location of his security blanket and 'soon to be ex' pacifier. He slowed down some once he had his "lamby". Hunter was then able to sit on my lap and eat a few crackers and punish an apple juice. It was after lunch and he hadn't had anything to eat or drink since dinner the night before. The good news is we didn't have to wait long for the results of the biopsy. One of Hunter's nurses called the next day to let us know there are currently no signs of GVHD in his skin tissue, one step closer to home.
Today Hunter was examined by an ophthamologist. I have to admit I thought it was going to be difficult for Hunter to maintain his composure while having his eyes examined. However, I was pleasantly surprised by Hunter's willingness to hold still and allow the doctor to shine lights and put magnifying glasses in front of his eyes. Also, as a proud parent, I think the doctor was a little impressed Hunter was able to read the letters and numbers on the wall, even with one eye closed. Anyway, it appears Hunter received another good report. The ophthamologist said, "his eye surface is moist, his tear ducts are shaped properly and there are no cataracts." He told us Hunter remains at risk, about twelve percent, of developing cataracts within the first three years after undergoing chemotherapy. That risk lessens over the course of the fourth and fifth years. Hunter will fall back into the mainstream population after five years time. Until then he will have ophthamology visits annually or when deemed necessary by any unusual circumstances.
We are holding our breath for tomorrow's dental exam and the results of last Thursday's extensive blood work. If you read this post before then please say a prayer for Hunter or send him some positive thoughts. We are extremely anxious to reunite our family. Thank you all for your constant and unconditional support. It helps us hold on to our sanity.
P.S. I had to include this picture of Hunter baking a cake for his dad's milestone birthday yesterday!

Wednesday, December 9, 2009

Tuesday, December 8, 2009

Day +75 (A plan ...)

The doctors have put together a plan to discharge Hunter from outpatient care in Seattle as quickly and safely as possible. His Day 80 evaluation has officially begun and if all goes well (knock on wood) we could potentially and unexpectedly be home for some part of the Christmas/New Year holiday.

This Thursday Hunter will have an extensive blood work up and skin biopsy procedure. The blood analysis will look at Hunter's current immune function, still in its infantile stages, and what percentage of his immune system is the donor's versus Hunter's previous system. On Day +28 we learned Hunter was 100% donor engrafted. We hope that remains the same, however the possibility exists some of Hunter's old immune system may still be present. Luckily, this doesn't necessarily create a problem, and as we understand it, would not impede our progress in returning to L.A.

The skin biopsy is a thirty second procedure for which, unfortunately, Hunter must be sedated. This means he will have to stop eating and drinking at a certain time late Wednesday night, early Thursday morning, and the potential for a cranky little man grows. Thankfully, his procedure is scheduled for 10:45 am and we hope it takes place on time. They explained to us the surgeon will remove an area of skin from Hunter's back side about four millimeters in diameter with something similar to a hole punch. This will allow the doctors to look at whether Hunter's skin cells are normal or show signs of GVHD. If Hunter has GVHD of the skin they will also be able to tell if it is acute or chronic, and to what degree, ranging from mild to severe.

Next week Hunter is scheduled for opthamology and dental exams. Each test will determine if Hunter is suffering from GVHD in either his eyes or mouth. The Physician's Assistant explained that for Hunter's particular disease, WAS, which is not cancer related, a follow up bone marrow aspiration is not necessary, music to our ears.

If these exams and analyses come back clean for GVHD and his immune function looks good the doctors will restart Hunter's steroid taper and begin our discharge paperwork. Again, while the idea of returning home is exciting it is also daunting. We were reassured by today's Attending Physician, who specializes in long-term issues faced by people who received bone marrow transplants as children. She let us know she will follow Hunter's care closely and the SCCA has twenty-four hour phone lines available for any and every question we may have.

Monday, December 7, 2009

Day +74 (A night of wondering ...)

Today we received a phone call from the outpatient clinic. The receptionist let us know Hunter would not undergo a bone marrow aspiration next week as part of his Day 80 evaluation. However, she was unable to provide us with the why. She also mentioned Hunter's skin biopsy would most likely be scheduled for this week, earlier than we anticipated, as opposed to next. I suppose we will find out the why at tomorrow's scheduled appointment but for tonight we are left to wonder. Our initial thought (optimism) is perhaps we are being fast tracked out of Seattle for the holidays. That would be wonderful, although scary too. We are concerned (pessimism) about the fact Hunter has not tapered off his current steriod. We would hate to return to L.A., have Hunter taper off steroids and GVHD rear its ugly head. Even though we long for home we expressed to Hunter's team at his last appointment we prefer to stay in Seattle a few extra weeks if necessary to put out any fires. We will have our hands plenty full with Hunter's care when we finally arrive home, the less issues the better.

Hunter attended his physical therapy appointment by himself today. His Physical Therapist and we wanted to see how he would perform without us there. We expected to see Hunter back in the waiting room long before the hour session ended. Boy, were we ever wrong! Apparently, he was much more focused without his parents watching his every move. Hunter was still going strong when we went back to retrieve him after fifty minutes, helping the PT put everything back in its original place.

We went to see Ashley and her mom after physical therapy, which has become part of our Monday, Thursday routine. Hunter enjoys seeing the Aven family, as do we. He dishes out hugs and kisses and takes turns sitting with Ashley and Ashley's mom, Tamara, remaining on his very best behavior. We can't help but feel inspired after our visits with them. We feel lucky to be able to call them friends.

P.S. Hunter's platelet count last Friday was 140,000!

Thursday, December 3, 2009

Day +70 (Harper's 1st Birthday ...)

First and foremost Hunter wants to wish his little sister, Harper, a Happy Birthday! He talks about her every day, including her in his bedtime routine. He understands (to some degree) she is home in L.A. and often tells us he misses her. We are all sad to be apart for this particular milestone. We look forward to having both children together, happy and healthy in 2010.

Hunter's clinic visit on Tuesday went well. He decided during his blood draw he wanted to sit in the exam room chair by himself as opposed to in my lap as usual. He said I needed to pull up a chair and sit next to him. "I'm a big boy, Daddy!"

We spent most of our clinic time with the Nurse and Physician's Assistant discussing Hunter's short-term plan. Initially, Hunter was supposed to taper off steroids by Sunday, December 13th. However, since Hunter's particular disease doesn't benefit from a small amount of Graft-Versus-Host-Disease like some others, the doctors decided to leave him on steroids through his Day 80 evaluation. This evaluation will be a detailed work up of where Hunter is post transplant. He will undergo a bone marrow aspiration, skin biopsy, opthamology and dental exams, and extensive blood analysis.

Today Hunter went to his physical therapy appointment. He continues to make progress and shows no signs of last week's movement issues. He truly enjoys the various activities since it is one of the few times during the week he gets out of our (isolation) apartment. Tomorrow Hunter has his routine blood work, weekly nasal wash and IVIG appointment, which is now every other Friday.

Hunter's physical therapy appointments are at Seattle Children's. We make a point to visit Ashley and her family before or after each appointment. Ashley recently finished her THIRD round of chemotherapy in her battle against AML. Please, please keep her in your thoughts and prayers. She is an amazingly strong young lady who loves our Hunter and has connected with him in a very special way.