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. www.caringbridge.org/visit/ashleykealohaaven

Monday, November 30, 2009

Day +67 (Brief ...)

Hunter's movement is much improved over the past few days. However, today we made the decision with Hunter's primary Physical Therapist to continue his twice weekly appointments. He remains under watchful eyes during these ups and downs. We were happy to learn Hunter is almost back to his pretransplant assessment scores. Now we are all going to focus on building his core strength, walking on a line, walking on a balance beam and running, as well as a lot of squatting. We figure these therapy appointments are only going to enhance where Hunter currently is. Thankfully they also help burn some of his surplus energy.

Last Friday's blood tests revealed Hunter's platelets are holding steady at 125,000. We are quite pleased and look forward to tomorrow's blood draw, clinic and nutrition appointments.

Thursday, November 26, 2009

Wednesday, November 25, 2009

Day +62 (Two months and one day ...)

It is hard to believe it was two months and one day ago Hunter received his bone marrow transplant in the middle of the night. It's strange how time can fly and stand still simultaneously.

Last Friday's platelet count was 118,000 and this Tuesday's was 130,000. We are looking forward to Friday's number. Again, a person's normal platelet range is between 150,000 and 400,000. Hunter still has many other counts needing to reach normal range. However, we are happy he has working platelets since this was one of the issues that plagued Hunter prior to transplant.

The one current concern we have is Hunter's movement. Initially, he seemed to bounce back well after being discharged from the hospital. He showed improvement each day and was walking, playing and moving similarly to before his transplant. We believed he had regained most of his strength and flexibility, knowing we needed to work on his endurance. However, he appears to have digressed recently. He walks with a very wide base and looks like his muscles are always tight. He even loses his balance at times and ends up on his rear. We are thankful he doesn't complain of any pain and attempts to get on with things per usual. It certainly hasn't prevented him from bouncing off our apartment walls! Can you say cabin fever? stir crazy?

The doctors and physical therapists are monitoring Hunter closely. His Attending Physician said if it doesn't resolve by early next week Hunter will most likely undergo an MRI, looking at his hip joints. She thinks if his movement issue lingers it may be either from one of two current medications or a residual side effect from one of the chemotherapy drugs.
We are hoping it is a direct correlation of how hard the physical therapists are pushing him. However, better safe than sorry, right?!

P.S. The news out of L.A. is Hunter's little sister, Harper Aaliyah, began walking today. Her first birthday is a week from tomorrow. We tell ourselves we'll have many more milestones together as a family. However, I must admit these are difficult to miss.

Thursday, November 19, 2009

Day +56 (More of the same ...)

Tuesday's outpatient visit showed Hunter's counts are steadily improving. We were excited to learn his platelet count is 106,000! Even though Hunter is currently meeting his fluid intake requirement, he continues his nightly four-hour hydration and anti-nausea medication, both of which will be re-evaluated at tomorrow's appointment. Beginning next week Hunter's clinic visits will be once a week provided everything remains stable. Now the biggest issue is how Hunter's body reacts to the steroid taper, whether there are any flare-ups of GVHD. If so his doctors will re-evaluate the steroids, possibly increasing the dose.

Yesterday Hunter had a great physical therapy appointment with a variety of activities. He bounced on two different trampolines and bowled. Hunter and another patient played with a small parachute, squatting to pick it up and stretching tall to release it. At the end of the session the therapist wanted Hunter to try yoga, but he wasn't having it.

We visited with one of our neighbors at RMH today. They are going home tomorrow, and we just realized they've been staying in the apartment directly below us. They made us smile when telling us how they said "Oh, Thumper's awake!" when referring to Hunter's early morning antics.

(Ghostwritten by Grandma Marcia)

Monday, November 16, 2009

Day +53 (No news is good news, right?)

There hasn't been much to report these past few days. Everything remains status quo as Hunter continues to gain strength and independence. Yesterday Hunter's friends from the volunteer organization Side-by-Side came for a two hour playdate, part of our Sunday routine. We love the fact Hunter has someone to interact with besides us. We in turn have the opportunity to get out of the apartment knowing Hunter is safe and sound. We used to worry he would cry when we left and he usually did. However, yesterday he was telling us "Bye. See you later," while ushering us out the door. We had to laugh, but truly appreciate his comfort level with Allison and Lynn.

Today Hunter had his first physical therapy appointment since his initial assessment. He suffers from sensory overload when he enters the mini-gym and struggles to concentrate on any one thing before settling down for his session. He reminds me of a hummingbird stumbling across a hundred flowers all to himself, floating around the room from toy to toy, ball to ball, activity to activity. He impressed us with his ability to figure out how to walk along a low balance beam while squatting to pick up plastic cupcakes every few steps. The boy even dismounted at the end when he got comfortable with what he was doing. I had to stifle a laugh at that point. We were pleased to learn he will be reevaluated next Monday to determine whether he needs further appointments. Initially, we were scheduled for twice weekly sessions through early January. Perhaps the circuit and cross training in the halls and on the stairs of the Ronald McDonald House have helped Hunter (Dad says tongue in cheek).

Truly the biggest news of the past few days is Hunter has gone "peepee in the big boy potty" three consecutive days! Does it get any better than that?

Friday, November 13, 2009

Day +50 (Half way home ...?)

The last few days have been rather quiet. Yesterday Hunter had his occupational therapy assessment. The therapist was pleased with his progress since transplant and did not require any additional sessions, which allows our schedule some flexibility during the week. Today's outpatient clinic visit was also pretty quiet, unless you count a temper tantrum or two by Hunter. It was the basic blood draw, IVIG infusion, physical exam that take place every Friday. Hunter's platelet count increased to 85,000, truly unbelievable! However, since Hunter did not meet his hydration requirement on Wednesday or Thursday, the team put him back on a four hour infusion of 250 milliliters. Luckily for all of us it's not the ten hour infusion! Hunter's antinausea medicine was discontinued after Tuesday's clinic visit, but restarted today due to this mild setback. Hunter begins twice weekly physical therapy appointments on Monday. We look forward to these "work out" sessions as he still fatigues easily. Another fifty days and we could potentially be back in L.A., also unbelievable!

P.S. Please, please, please help Hunter (us) send out positive vibes, prayers and well wishes to his (our) friend Ashley!

Tuesday, November 10, 2009

Day +47 (Routine ...)

There hasn't been much to report these past few days. Today's outpatient visit covered the basics: a blood draw, meeting with Hunter's Nutritionist and physical exam. Luckily, Hunter's platelets and ANC are holding steady, especially since he had a nosebleed in the exam room. Nosebleeds were such a part of our lives prior to Hunter's transplant, it was hard not to stress out when it began. It's even harder to believe he had one that actually stopped on its own, but it did! Other good news from today's visit is Hunter's doctors cut his four hour hydration back to a two hour magnesium drip. We love this because it means we only have to get up once during the night as opposed to four or five times!

Thankfully, Hunter has fallen back into his pre-transplant daily routine. He's back on his breakfast, lunch, snack and dinner schedule, as well as his nap and bedtime schedule. He even sleeps in an extra hour in the morning, which we certainly aren't complaining about. Initially, he was leery of going to sleep by himself since one of us slept by his bedside every night for six plus weeks. However, he seems to have gotten over it.

Saturday, November 7, 2009

Day +44 ("Boring is good ...")

Hunter's clinic visit yesterday was uneventful. He had his routine blood draw and IVIG infusion. Before being admitted we had enrolled Hunter in a nasal wash study, potentially giving us early insight to any viral infections he might have. The study entails swabs of his nostrils and throat. Thankfully, it is much less invasive than the "saline squirt up the nose and suction it out method" performed at the hospital. I believe it's safe to say Hunter prefers the swabs as he was relieved it was over quickly. His ANC and platelet counts held steady, which is good. Hopefully, we will see increases in both next week. Hunter has a routine chest x-ray this Monday, outpatient clinic Tuesday and Friday, and an occupational therapy assessment on Thursday. He still takes a plethora of oral medicines but we're happy the doctors tapered some of the amounts and frequencies. The doctors also decreased Hunter's nightly hydration. He now has 250 milliliters of fluid running over four hours instead of 700 over ten. This change allows us all to get more sleep, which we certainly appreciate. The Physician's Assistant's words of advice during this appointment, "Boring is good!" We've never been so thrilled to be bored!

Thursday, November 5, 2009

Day +42 (Wet, wet, wet ...)

Today has been very slow. We didn't have any appointments and it's been raining steadily since morning. I suppose that isn't a real surprise since we are in Seattle, but we Angelinos are definitely out of our element (no pun intended). The three of us were going stir crazy in our apartment and had to improvise a plan for the day. We wanted Hunter to get some exercise since he doesn't begin physical therapy for another week and a half. The Ronald McDonald House we are living in has two levels. We decided to do laps up and down the hallways and allow Hunter to take the stairs between floors. He started out extremely well, but lost steam after a couple rotations. However, the boy is absolutely tenacious and wanted to continue on his own. We let him push himself for a little while, figuring he had two spotters on the stairs. Anyway, we were happy to get Hunter out of our apartment in some capacity two different times today. Subsequently, he had a great nap and is still thirsty from working out. He is close to reaching his fluid intake goal for the second consecutive day. Hunter's weekly IVIG appointment is tomorrow so we'll be inside in the morning. Hopefully, it will clear up by tomorrow afternoon allowing us to get outside for a wagon ride and some fresh Seattle air.

P.S. We had the pleasure of two friends visiting yesterday, one old and one new. We enjoyed them spending time with us.

Tuesday, November 3, 2009

Day +40 (A lull ...)

Hunter's first full week out of the hospital has been slow compared to what we have been used to the past seven weeks. Today he had his third outpatient clinic visit. I heard Hunter referred to as "Mr. Personality" while we were waiting for our appointment, which made me laugh out loud. He certainly is excited to be free of his hospital room and is as talkative as ever. Hunter understands English and French, but has spoken predominately English until recently. Now he says hello and goodbye, counts, exclaims, excuses himself and asks several questions in French, while referring to women and men as Madame and Monsieur.

We learned from Hunter's Nutritionist that he is exceeding his calorie intake goal, including protein and calcium goals. He is also very close to meeting his fluid intake goal, but will remain on nightly IV hydration. The team will reassess his need for this at Friday's weekly IVIG appointment. We would love for him not to be hooked up to an IV during the night, but understand his body is working extra hard to flush out all of the medicines he is taking. The best news of all from today's appointment is Hunter's platelet count is 74,000! Although, unintentionally we were brought back to Earth when a Physician's Assistant mentioned we are a little over a third of the way through our post transplant time in Seattle if all goes well. A third?! Really?!

Hunter's schedule is going to quickly pick up though. He was evaluated by a Physical Therapist yesterday. He begins twice weekly visits the week of the 16th until our undetermined return to L.A. Next week Hunter will meet with an Occupational Therapist and a Speech Therapist to be assessed. Occupational and speech therapy could possibly add another two to four appointments to Hunter's weekly schedule. A busy schedule will get no complaints from us though. We look forward to getting Hunter as healthy and fit as we possibly can before returning home.

Sunday, November 1, 2009

Day +38 (Nurses ...)

It's amazing how people you didn't even know six or seven weeks ago can come into your life and make an impact that will last a lifetime. The inpatient nurses of the Seattle Cancer Care Alliance did just that and solidified in our minds we made the right decision to bring Hunter to Seattle for his bone marrow transplant. The nurses not only took care of us as patients, they took care of us as people. They saw us through the chemo, hives, itching, crying, anger, throw up, nose bleeds, diaper leaks, and so much more. They explained, supported, calmed, and at times even nourished us. One nurse in particular makes a mean peanut butter and jelly sandwich.
I suppose it makes complete sense being with the nurses 24 hours a day, many working twelve hour shifts, and going through something so intense. It's a situation where it's impossible not to get to know someone on a personal level. Our connection with the nurses was one of the reasons our discharge was sad. Hunter was completely spoiled during his time in the hospital as were we. We know he misses his primary care nurses because he tells us so everyday, "I miss (Nurse) and (Nurse) and (Nurse)." The day we left the hospital he said, "Hey, where's my hug?" each time we passed a nurse on the way out. He definitely felt the love and so did we.

Friday, October 30, 2009

Wednesday, October 28, 2009

Day +34 (The first twenty-four hours ...)

Yesterday we were excited, anxious and actually a little bit sad to finally leave Children's Hospital. The last twenty-four hours have been a whirlwind as we are trying to negotiate life on our own again. There are many new and important details to living in the outside world with an immune suppressed child.

Our first night was a bit comical, after the fact. We had to draw and administer what seemed liked a Longs Drugs of medications, and we had to connect a bag of nightly hydration to Hunter's Central Line. The medication part wasn't too bad. It certainly helps that one of us has a background in pharmacy. Hunter doesn't mind taking the meds orally, and everything is written out for us on a spreadsheet.

Connecting his nightly bag of fluids was another story. We got everything ready thinking we'd have plenty of time for the fluids to finish before we needed to leave this morning for Hunter's outpatient appointment. We might have had enough time if I hadn't spiked the bag with the IV tubing in the wrong opening. In my defense the bag the Home Infusion Services team used during our instruction at the hospital was completely different than the bag that showed up at our apartment. Luckily, after a lot of cursing, machine beeping, Hunter crying and a call from the Home Infusion nurse on duty, we figured out how to correctly spike the bag and connect Hunter to his necessary hydration. Definitely not as easy as the practice dummy we used the day before!

Now that we are at the Ronald McDonald House a concern we have as parents is keeping ourselves well rested and well fed, which isn't always easy. We found ourselves running out the door this morning to Hunter's outpatient appointment without eating breakfast. As Hunter's primary caregivers we realize we need to make a conscious effort to take care of ourselves, including flu shots tomorrow.

Hunter is doing well. His ANC is about 5,000 and his new marrow shows signs of creating platelets! Hunter's platelet count increased on its own (for the first time) for three straight days. He currently has 50,000 platelets. Those who've followed Hunter's journey from the beginning might remember he's had less than 5,000 platelets for the majority of his life. We are excited to see how these numbers continue to improve. Hunter's outpatient appointments, presently scheduled two days a week, will be adjusted as needed.

Hunter struggles some to get around on his own, but has improved just by being out of the hospital. He doesn't have the balance, stability and endurance he had prior to being admitted. However, he certainly has the tenacity. We look forward to getting him involved with the Physical and Occupational Therapists soon. Hunter's speech has picked right back up. He talks nonstop, asking question after question and telling stories to people without any reference point. If you ask him a question like "red or blue?" he'll answer with an "I think" at the end. "Blue I think."

It's definitely colder here in Seattle than what we are used to in L.A. When we go outside Hunter wears a hat to protect his bald head. So for the first time in his life, he is wearing a baseball cap with a hoodie pulled over it, certainly a glimpse of the not too distant future.

Tuesday, October 27, 2009

Sunday, October 25, 2009

Day +30/+31 (6 weeks ...)

It is hard to believe Hunter was admitted to Seattle Children's Hospital six weeks ago today. There have been a variety of ups and downs and points where time literally stood still. However, the pace is definitely picking up as we move toward Hunter's discharge day, potentially this Tuesday! Hunter continues to improve and has made strides in his eating and drinking. He is completely off IV nutrition, and thankfully it looks like he will be discharged without a feeding tube. Tonight Hunter's last IV medication was switched to oral, and he handled it like a veteran. He will leave on Tuesday with a minimum of ten medications he will take around the clock. One of the largest issues we are negotiating is Hunter's emotional breakdowns due to steroids. There are moments, long and short, where he absolutely loses his marbles. His emotions fluctuate between extreme mania, violent rage and profound sadness. We are trying to find a balance between disciplining Hunter and supporting him. Hunter's steroid dose will gradually decrease every five days, ending mid-December. Hopefully, this combined with good food and rest will lower the frequency and intensity of these episodes.

Friday, October 23, 2009

Day +29 Part 2 (Early results ...)

We didn't expect test results from yesterday's blood draw until Monday, however we learned this afternoon that Hunter is 100% donor engrafted! This is a very important milestone in Hunter's recovery and we are thrilled.

Day +28/+29 (The outside world ...)

Hunter had a four hour pass to the outside world Wednesday and Thursday. We used this time to enjoy the comfort and familiarity of our Ronald McDonald House apartment both days. We felt our apartment was the safest option as we did not want to expose Hunter to anything unnecessarily. Wednesday we took our car for the excursion due to the unforgiving Seattle rain. However, yesterday the weather relented and allowed me to pull Hunter, his lamb, his blanket and his pacifier in a red wagon to the apartment building and back. He happily identified the various vehicles passing by. Hunter was very excited to see his toys, many of them new thanks to several care packages. He received a Thomas the Train blanket and wanted to sit on it immediately, sharing the names of all the characters. It was good for us to see some of that Hunter sparkle while he enjoyed himself in his old stomping ground. Hunter isn't very steady on his feet since his transplant, so he definitely needed the exercise moving around the rooms. We were very pleased that on both days he ate a good lunch, breaded fish fillet dipped in mustard with an applesauce chaser. Admittedly, Hunter spent the majority of his time asleep. It was the first time in a long time he was able to sleep uninterrupted. Unfortunately, we had to wake him both days to return to the hospital. Luckily, when we did he simply mentioned the things he wanted to take with him and the things and people he missed at the hospital.

Wednesday, October 21, 2009

Tuesday, October 20, 2009

Day +25/+26 (Field trip ...)

Hunter is now officially off his IV pain medication. This is a major step towards his being released into outpatient care here in Seattle. I never thought I would say it, but we are thrilled with the prospect of returning to our Ronald McDonald House apartment. The doctors have converted the majority of Hunter's IV medications to oral. He isn't a fan of taking oral medicines like he was before being admitted, however he manages to take them and keep them down. Unfortunately, he's taken a couple steps backward with his eating and is still on fifty percent of his IV nutrition. We spend a lot of time distracting, coaxing, bartering and threatening Hunter to get him to eat. When he is discharged he may need a feeding tube, as well as IV fluids, which is an absolute. We received the results of Hunter's most recent nasal wash. He finally cleared parainfluenza! However, he tested positive for bocavirus. Luckily, he does not need to remain in isolation for this particular virus unless he is symptomatic, which thankfully he is not. Also, this result will be double checked. This afternoon we roamed around the unit at our leisure, free of Hunter's IV pole. His ANC is 2240. This number, combined with Hunter not constantly on IV, allows us to take a field trip tomorrow! Although his new immune system has a LONG way to go, we get to take him out of the hospital for some fresh air and activity for about two hours. We are very excited since Hunter has been inside the hospital since September 13th.

P.S. Today Hunter figured out some parts of Finding Nemo are a little bit scary. He cried for Nemo when he was stuck in the fish tank at the dentist's office. We had to quickly switch to Toy Story. I wonder how long it will take before he realizes some parts of Toy Story are a little bit scary too.

Sunday, October 18, 2009

Day +23/+24 (Status quo ...)

Hunter remains on the mend. He's eating more and spending more time awake. Although both could potentially be attributed to the steroids, we are happy with his progress. The doctors continue to scale back his IV pain drip and other IV medications as well. They will not check his liver function every day as they believe he is over the VOD hump. The numbers regarding his liver look much improved so we are reassured by that. Tomorrow they will decrease Hunter's IV nutrition to half of what he started on.

It's hard to believe Hunter has been in the hospital five weeks to the day. Initially we were told to plan on Hunter being in the hospital for "six weeks or so." If he continues to improve and has no other setbacks, he is on target to be released into outpatient care at "six weeks or so."

Friday, October 16, 2009

Day +21/+22 (Improvement ...)

Hunter is returning to his old self slowly but surely. He spends more time awake but tires easily. Hunter eats small amounts of food, although he loses interest quickly. Yesterday he got out of his crib and took "mini" laps around his "mini" room. He even attempted to enter the hallway, but can't since he is still in isolation for parainfluenza. We hope he clears his next nasal wash on Monday so he is free to roam around the unit. I imagine he'll want to stop by Ashley's room. Honestly, I can't remember the last time he was out of his crib for anything other than his daily bath. The doctors are pleased with Hunter's progress, especially considering where he was at this time last week. They have further spread out his anti-nausea medicines and scaled back his IV pain drip. Also, he is no longer on any form of Lasix. Hunter's Attending Physician said Hunter has clinically diagnosed acute GVHD of the liver, skin and possibly of the gut. He will remain on steroid therapy to treat GVHD. The doctors mentioned they may decrease the dosage in a couple of days, although Hunter will be on steroids for approximately two and a half months. Hunter's blood pressure has been high and he receives medicine to treat this too.

Wednesday, October 14, 2009

Day +19/+20 (Like a newborn ...)

A difficult thing for me as a parent, probably like every other parent, is to hear my children cry. However, recently, the most difficult thing is to hear Hunter cry and not know what to do about it, or not be able to do anything about it.

Hunter woke up in the early evening last night and cried and cried. I tried to hold him, comfort him and it didn't help. The nurse, after my prompting, gave him an extra dose of pain medicine. Although I wasn't certain he was actually in pain, as opposed to being extremely fatigued. He eventually quieted down and, after two solid hours, fell back asleep.

This morning, after what was for all intents and purposes a "good" morning, Hunter cried and cried. Again, I tried to hold him, comfort him but to no avail. The whole scenario was an instant replay of last night, except he fell asleep after an hour. And like last night, I'm left wondering what the reality of his situation was.

It reminds me of when Hunter and Harper were newborns. We spent so much time trying to determine if they were hungry, dirty, tired, gassy and the list goes on. We tried to figure out what each cry, whimper, yawn, coo and yelp meant. It took some time, but slowly we started to figure things out.

I sit here and think to myself Hunter's transplant was just twenty days ago. He is like a newborn. He's relearning how to eat, how to walk, how to talk/express himself, how to do most everything all over again. And we're relearning how and what to feed him, when to put him down for a nap, when and when not to push him.

I realize he'll have his good days and bad days. I suppose we will too.

P.S. Speaking of newborns, welcome to the world Cayden Rothfield and Soleil Wicks!

Monday, October 12, 2009

Day +18 (The 5 major requirements to be discharged ...)

Hunter's today reads very similar to Hunter's yesterday so I want to take a minute to share our short-term goals for him. Hopefully, achieving these goals will allow Hunter to be discharged into outpatient care here in Seattle. It almost seems silly to be sharing these after Hunter's brief visit to the ICU for VOD this past week. However, we are looking forward with all the positivity we can muster.

1. Engraftment (2 consecutive days with an ANC greater than 500) - Check. Hunter's ANC this morning was 948.

2. No fevers or active infections - Check. Knock on wood.

3. Tolerating some food - Hunter hadn't eaten in days until this morning. It might not seem like much but he ate four grapes, a bite of banana and a bite of graham cracker, a virtual feast.

4. Tolerating oral medicines - This has been a slight (tongue in cheek) struggle. Generally, Hunter only has one oral medicine in the morning and one in the evening. He fights us tooth and nail every step of the way. We take away his pacifier and security blanket among other items to get him to eventually comply (I know, I know, we're mean). It appears we have a way to go since he will have eight to fifteen (ish) oral medicines when we're on the "outside."

5. No IV narcotics - We scaled back Hunter's IV pain drip yesterday, but did not today. At times, he cries and we aren't sure what ails him: fatigue, pain or a combination of the two. I think it will take us some time to get a handle on, or a feel for this without trepidation or second guessing ourselves.

Sunday, October 11, 2009

Day +17 (Today's News...)

Today has been much like yesterday with Hunter sleeping most of the time. He had his bath, watched Toy Story, read books, and wrote on his white board. Hunter's close friend from the floor, Ashley, and her dad stopped outside our door to visit. Before the door opened all the way, Hunter said "Hi Ashley!" We truly appreciate their friendship.

Hunter's Lasix drip and IV narcotic have been decreased, and he is still on prednisone therapy.

His ANC was 803 today, so Hunter is considered engrafted! This means one of the five major requirements to be discharged from the hospital has been met!

Hunter's belly measured a bit smaller, and his intake and output started to even out. All of today's counts remained the same or improved.

Hunter looks like he spent the day at the beach as his skin has a reddish hue, another indication of Graft Versus Host Disease.

Although we are exhausted, we are very thankful for today's counts...

(Ghostwritten by Grandma Marcia)

Saturday, October 10, 2009

Day +16 (Top ten ...)

1. The elevated counts regarding Hunter's liver are slowing decreasing. This is good news.

2. The doctors think Hunter might have Graft Versus Host Disease of the gut in addition to his liver. This can be managed through steroid therapy or other immunosuppressant drugs.

3. Hunter has not had a temperature since beginning prednisone therapy. He will have twice weekly labs to check for infections because steroids can mask a fever.

4. The doctors minimally lowered Hunter's Lasix drip to rest his kidneys, even though there is currently no issue with them. They have been working overtime the past few days and deserve a break.

5. Hunter is near engraftment. His ANC (based on the white blood cell count of his new immune system) was 700 today. The doctors consider engraftment to be two consecutive days above 500. This is encouraging, however this particular count fluctuates daily and could dip before going back up.

6. During rounds this morning Hunter's Attending Physician said, "We're not out of the woods yet but things seem to be moving in the right direction."

7. Hunter slept uninterrupted through the night and has been awake for a total of two hours today. He played games, read books and watched Toy Story.

8. We are happy to be back in the transplant unit. However, we lost our spacious suite and are now in a "closet" overlooking the psychiatric ward playground. We've certainly had an eyeful so far.

9. Thank you to Grandma Marcia for holding down the blog during a stressful time.

10. Thank you for all of your comments, texts, emails, Facebook messages, phone calls, voicemails, letters and care packages. We are extremely appreciative of the constant support.

Friday, October 9, 2009

Day +15 (Back to the Transplant Unit ...)

It's Grandma Marcia to share Hunter's day...

Hunter slept all night and most of the day.

There were 20 doctors, nurses, and residents on "Hunter's Team" at morning rounds!

Hunter's condition is stable. After being in the ICU 24 hours, this afternoon Hunter returned to the Transplant Unit where he is being monitored closely. The Lasix drip continues, and Hunter has started to move fluids again. Although Hunter's intake remains positive, the numbers did not go up. The doctors think this is because of the predisone, an indication Hunter may have GVHD of the liver. He remains on the prednisone. Thankfully, there are no signs of a flare-up of the parainfluenza virus.

For the first day in his life, Hunter is grumpy, grumpy, grumpy. He does not want people touching him, pressing on him. He threw his pacifier and toy truck out of his crib, more than once. He took the stethoscope away from a doctor, who got another one that Hunter tried to take. One of the doctors said steroids sometimes turn toddlers into teenagers. It sounds as if Hunter is an "insta-teen"!

As long as Hunter's condition remains stable, Rhea will resume posting tomorrow.

Thursday, October 8, 2009

Day +14 (Hunter is where he needs to be...)

Hello, Grandma Marcia here... I've been asked to write today's update.

Know that Hunter is himself, interacting with and giving hugs to everyone; however, his BIG belly is the primary concern. Last night some of Hunter's drugs were switched to ones that are not as hard on his liver.

Hunter's team of doctors, which now includes a renal specialist, is working to determine whether his "unhappy liver" is caused solely by the VOD or by additional factors such as early GVHD (graft versus host disease). How Hunter's body reacts to the prednisone drip started this morning will help his doctors make that determination.

As a pro-active, precautionary measure, Hunter was moved to the ICU this afternoon. Hunter is able to receive treatments in the ICU which cannot be administered in his room. Hunter's kidneys are functioning, but not well enough. A Lasix drip has been started to help flush fluids from his body. If his kidneys need further assistance, this can be handled in the ICU as well. Hunter has not received any drugs to treat his parainfluenza virus. As his doctors know the predisone may cause the parainfluenza to flare up, they are prepared for that possibility.

Thank you all for your continued prayers and good thoughts...

Wednesday, October 7, 2009

Day +13 (The good and the bad ...)

The good news is Hunter's morning lab results show early signs of donor engraftment.

The bad news is Hunter's morning ultrasound revealed he is suffering from Veno-occlusive disease.

"Veno-occlusive disease (VOD) is a potentially serious liver problem caused by high-dose chemotherapy and/or radiation. The blood vessels that carry blood through the liver become swollen and blocked. Without a supply of blood, the liver cannot remove toxins, drugs and other waste products from the bloodstream. Pressure and fluids build up in the liver, causing swelling and tenderness in the liver area. The kidneys may retain excess water (ascites) and salt, causing fluid to build up in the body and swelling in the legs, arms and abdomen.

"The symptoms of VOD include rapid weight gain, swelling, jaundice, an enlarged liver, pain or tenderness in the area of the liver, and accumulation of fluid in the abdominal cavity.

"There currently is no proven preventive therapy for VOD. When VOD is diagnosed, the medical team will take steps to prevent the more serious complications from developing. These include minimizing or eliminating the use of certain drugs that can aggravate the problem, relieving fluid buildup in tissues and organs with diuretics or dialysis, restricting salt intake, carefully monitoring fluid volumes in the body, and transfusing the patient with red blood cells.

"In most cases, VOD is mild or moderate, and the liver damage is reversible."

Please keep Hunter in your thoughts and prayers.

Tuesday, October 6, 2009

Day +12

Hunter had a rough day. He is currently taking his second nap since he woke up this morning. His temperature reached a high of 105 degrees, making him very uncomfortable. It seemed sitting in my lap had a calming effect. Sadly, he spends a lot of time whimpering when he is awake. The nurses give him Tylenol every four hours to keep his fever down and possibly help his comfort level. This is the third day in a row his blood pressure has been high. He received two doses of Lasix earlier to lower it, which created many wet diapers. Also, his belly is huge, melon shaped. Hunter’s Attending Physician ordered an abdominal x-ray this afternoon. The initial report did not reveal anything worrisome. However, we are awaiting further results.

Monday, October 5, 2009

Day +11 (It's back ...)

Hunter's nasal wash revealed he has parainfluenza again. This explains his fevers and runny nose. Also, we now realize his cough was not just related to his mucositis. Hunter's Attending Physician isn't overly concerned at this point. She said they will continue to monitor him closely for any signs of respiratory distress. Subsequently, Hunter is extremely tired. He woke up at 5:30 am because he was retching bile. However, he managed to fall back asleep for an hour or so, but was up for good by 7:30. He took a two hour nap around noon after his bath, but still managed to pass out by 6:30 this evening. He had a fairly busy day for being a bit sleep deprived. He received platelets first, then he received two drugs. One drug, Lasix, was to promote urine output since his blood pressure was high. The other drug was his final dose of methotrexate, an immunosuppressant. This afternoon Hunter went to radiology for his weekly chest x-ray, which the doctor said looked good. Our isolation status was taken to another level with today's news. Hunter is a prisoner in his crib and we are prisoners in his room, as we cannot use the unit's common areas. On the bright side, at least we are together.

Sunday, October 4, 2009

Day +10 (Isolation ...)

Today was not one of Hunter's better days. He remained in good spirits even though his energy level was low. He spent a lot of time in his bed after waking up this morning with a temperature and high blood pressure. Hunter's Attending Physician noticed a rash beginning on his arms as well. She said it was quite normal and a possible sign of engraftment, although it's relatively early for that. He developed a runny nose before his nap, so the nurse collected a sample for testing. In the meantime, Hunter goes into isolation for the next five days. The nurses will put on gowns and masks before entering the room and we are not allowed into the family areas. They want to be cautious because Hunter suffered from parainfluenza prior to being admitted. Hunter woke up from his nap and threw up several times, mostly bile. It amazes me he has anything to throw up since he doesn't eat or drink. The nurses are giving him medicine for his high blood pressure, temperature and nausea, and keeping an eye on his rash. It could be better but it could be way worse. Honestly, tomorrow we hope it's a little bit better.

Saturday, October 3, 2009

Day +9

Today has been another good day, slow and uneventful. Hunter received platelets again this morning and then enjoyed a leisurely Aveeno soak in the tub. He does a great job entertaining himself in his crib with a variety of toys, games and books. We decided to turn off the television for the last three days. He spends a lot of time mimicking the doctors' and nurses' daily routines with him. He certainly puts them through their paces and makes sure they don't forget any steps in their examination. He often helps the nurses with their paperwork, blood pressure and temperature reads, and the cleaning and flushing of his Line. One small concern we have is his itching. Hunter is slowly starting to complain his bottom is bothering him. Right now it is something we are monitoring.

Our daughter, Harper, is ten months old today. We miss her very much. She is racing through her first year of milestones. We can't wait for the four of us to be reunited and healthy.

Friday, October 2, 2009

Day +8

I was planning to post "it was another quiet day." However, as soon as I got on my computer, Hunter decided it was time to pretend he was Mount Vesuvius. Luckily, we were able to clean him up quickly as his bout of nausea passed without much fanfare. Now he's back to his normal self, cuddling with his stuffed tiger and thoroughly cleaning her Line. Earlier in the day he received another platelet infusion, as well as his weekly IVIG infusion. He is fairly hoarse from throwing up and mucositis so, believe it or not, he doesn't talk constantly. When he does speak he cracks us up. He was very concerned this afternoon as he could hear one of his friends crying across the hall. He kept telling us, "Carter's sad. Poor Carter." We asked him if he wanted us to close the door so he wouldn't have to listen to Carter crying. He said no because he wanted to make sure his friend was ok. We went on a walk after his bath and we passed the Charge Nurse's office. Hunter turned back around, went into the office and said, "Hello, everybody!" He then went up to the Charge Nurse and said, "You come with me. C'mon, walk with me." She actually did until Hunter came across another nurse he wanted to walk him the rest of the way to his room. Hilarious. Hunter had his weekly visit from his Side by Side (www.sidebyside.org) volunteer, Allison (Wonderland). He really enjoys the company and we are thrilled to have the support.
He had a great night last night. We are hoping for another tonight, especially me since I'm on duty!

Thursday, October 1, 2009

Day +7 (One week later ...)

Hunter's nose bleed last night finally stopped/clotted after about an hour. He quickly fell asleep and snored his way through most of the night. He received a platelet transfusion before midnight and his level rose nicely. He woke up this morning energized and happy. The doctors are amazed by how well he is doing. The Attending Physician looked at Hunter today and said, "Are you sure you had a transplant?" However, we remain cautiously optimistic and realize things will most likely get worse before they get better.

In the meantime, Hunter has made friends with another patient and her family. She is a seventeen year old high school student from Washington who spoils him with lollipops, which are the only things he considers eating. He remains on around the clock IV nutrition.

Wednesday, September 30, 2009

Day +6

Today's post has been preempted by Hunter's evening nose bleed. We are waiting for platelets to arrive for an infusion. We will update you again tomorrow. Overall, prior to this evening, it was a good day.

Tuesday, September 29, 2009

Day +5 (Graphic/Everything worked out ...)

The nurse found Hunter having a significant nose bleed at 2:00 this morning. We aren't sure how long he was bleeding before she found him, but it must have been a while from the looks of him and his bedding. Luckily, three other nurses immediately joined in helping our nurse and me. One applied pressure to Hunter's nose, which he didn't exactly appreciate. A second supplied us with wet rags while making sure the used ones were put into the soiled linen hamper. A third manned Hunter's Line and IV pole. The fourth took Hunter's vital statistics, including blood pressure and temperature, during the commotion. Their assistance allowed me to calm him, not an easy task. The Physician's Assistant ordered an immediate platelet infusion. Honestly, the most difficult part was Hunter throwing up all of the blood he swallowed before we found him. He actually went back to sleep about 3:30, after the platelets arrived and we had cleaned him up. They also squirted Afrin up his nose to help with the clotting. Who knew? Unfortunately, his nose started bleeding again around 4:15. It took another team effort and some additional throwing up, but Hunter was back in bed asleep by 5:00. Hunter wanted no part of the second nose bleed, as he was so tired from the Benadryl and Atavant. He told the nurses to "move out of the way" so he could lie down with his pacifier and lamb. He wasn't concerned in the slightest about the additional bleeding. He slept soundly until 11:30, perfect timing since his Physical Therapist arrived at 11:31. He went from snoring to a "fishing expedition" in his room in less than two minutes. He did so well with his therapy that after it was finished he decided to take his Therapist for a walk down the hallway. He did very well all things considered, but he definitely looked like a drunken frat boy trying to make it home from the bar after last call. The doctors are still impressed with how well Hunter is doing. They will continue to monitor his platelet and hemoglobin/hematocrit levels. He will likely have a blood transfusion late tonight or early tomorrow.

P.S. for Day +3 ... I can't believe I failed to mention that Hunter had a dance party in his room with four of the nurses. He's received several musical greeting cards, which he loves to show off. On Sunday he was showing every nurse who came to see him the cards. When the music started to play Hunter would dance. When the music stopped he would "freeze" with his hands on his ears. Well, one thing led to another and he had the nurses dancing and freezing with him. I have to say it was pretty cute because each of the nurses came in when they had a chance and danced with Hunter for a few minutes. And each nurse came back in for one last dance before leaving for the day. Hilarious.

Monday, September 28, 2009

Sunday, September 27, 2009

Day +3 (Sleeping Beauty)

I may have spoken too soon regarding Hunter's sleep habits. He slept soundly from 10:00 last night until 10:30 this morning. It was blissful for me since I was on night patrol. I think a big reason he was able to finally sleep so well is his itching has almost completely subsided. The doctors decreased his new IV pain medication, for now, and increased his Benadryl. He had another great bath after riding around the unit in one of the toddler cars, which ended up parked in the tub room. He also spent some time on one of the family room video game consoles playing a Lightning McQueen game. Hunter was so invested in the video game the nurse had to bring his IV pole to reconnect him to his medications. Thankfully, he took another long nap today from 3:15 to 6:00. Currently, he's watching Elmo in Grouchland on repeat mode. He discovered Finding Nemo yesterday so that could potentially make it into his rotation along with Cars and Thomas.
Hunter seems pain and itch free so we are very pleased. However, we noticed his hair is beginning to fall out. We may break out the clippers soon!

Saturday, September 26, 2009

Day +2

Hunter definitely has his days and nights confused. He woke up in the middle of the night and did not go back to sleep until 5:00 am. He then slept in until 12:30 and was asleep again by 3:30 for a three and a half hour nap. Hunter threw up once when he woke up this afternoon, but quickly bounced back. Unfortunately, it looks like he is developing mucositis. He was very excited to take a bath today. He had great fun sliding back and forth along the tub while kicking and splashing water everywhere. He made us laugh out loud when he told us he wanted to lie down in the water and take a nap. The doctors are still adjusting his medicines in their attempt to determine the source of his itchiness. He seems a lot better today, but at times still can't keep from scratching. Honestly, other than a couple of disastrous diapers, it's been another good day.

Friday, September 25, 2009

Day +1 (Can you say rough night?)

Hunter is finally getting some well deserved rest, snoring in his crib. Overnight, in addition to being extremely itchy, he threw up twice and had two diaper explosions. Today his hives have subsided. He even asked for a popsicle and finished almost two. It's been a quiet day.

Thursday, September 24, 2009

Another Day 0

Hunter's transplant began at 12:50 this morning. The experience was extremely surreal. The infusion itself was similar to a blood or platelet infusion. The nurse hung the bag of marrow and ran it through Hunter's Line. The entire process lasted between four and five hours. Initially, Hunter was asleep but awoke during the course of the transplant. He was reluctant to go back to sleep until about 4:30. He woke up this morning about 9:45 in a good mood. Eventually he became distressed due to skin irritation. Hunter scratches his thighs, chest, neck and face the majority of his time awake and a portion of his time asleep. Unfortunately, his skin irritation has been difficult to get a handle on these past few days. We hope that once the trace amounts of morphine clear his system he will be more comfortable. Hunter took an abbreviated nap late this afternoon and again woke up in a good mood. He definitely seems intoxicated from the plethora of medications. Now we wait to see how his body handles the transplant and prepare ourselves for the variety of its potential side effects.

Wednesday, September 23, 2009

Day 0 (The moment ...)

The moment we've been waiting for has finally arrived. Hunter's transplant is scheduled to take place in the middle of the night. He's been doing as well as can be expected. The hives, a side effect from the ATG, continue to be his primary complaint. The Benadryl and Atarax don't seem to be providing much relief. The pain team thinks his itching may also be a reaction to the morphine and changed his narcotic earlier this evening. They will continue to monitor Hunter closely.

Thank you again for your continued support, prayers and well wishes. They are greatly appreciated.

Monday, September 21, 2009

Day -2

Hunter received his final dose of ATG this morning. Afterwards, he received a blood transfusion. He will receive his final dose of Cytoxan, which is also his final dose of chemotherapy, thankfully, tonight at 10:00.

Hunter spent most of the day sleeping after a surprisingly playful morning. His temperature continually fluctuates and he is, more or less, covered in hives. He watches either Cars or Elmo in Grouchland while he is awake. He still takes a few medications orally in the morning and evening. Although the doctors switched most of them to IV because it will become increasingly difficult for him to swallow. Unfortunately, he threw up his medications this evening. We gave him a bath, as they are required daily, and he actually seemed to enjoy himself. However, we experienced a moment of panic. His nose began to bleed when we were drying him off. Luckily, it stopped pretty quickly. The nurse said they will most likely draw his labs earlier than usual to check his platelet count. We expect he will need a platelet infusion soon. Tomorrow serves as a day of rest prior to his transplant. Hunter does not have an appetite anymore and refuses anything he is offered, food or drink. He will be placed on IV nutrition within the next twenty-four hours.

Sunday, September 20, 2009

Hunter's current medication list ...

Acetaminophen (Tylenol) - pain reliever/fever reducer

Acyclovir - antiviral

Busulfan (Busulfex)* - conditioning (chemotherapy)

Ceftazidime - antibiotic

Cetirizine (Zyrtec) - antihistamine

Cyclophosphamide (Cytoxan) - conditioning (chemotherapy)

Diphenhydramine (Benadryl) - antihistamine/antinausea

Fluconazole - antifungal

Gentamicin - antibiotic

IVIG (Gammagard Liquid) - boost immune system

Lansoprazole (Prevacid) - antacid

Lorazepam (Ativan) - antinausea

Lymphocyte Immune Globulin (Atgam) - conditioning (chemotherapy)

Mesna - bladder protectant

Methylprednisolone - anti-inflammatory (steroid)

Methotrexate (Amethopterin)** - graft versus host disease prevention

Metoclopramide (Reglan) - antinausea

Montelukast (Singulair) - antihistamine

Morphine - pain reliever

Ondansetron (Zofran) - antinausea

Pantoprazole - antacid

Poly-Vi-Sol - multivitamin

Sulfamethoxazole and Trimethoprim (Bactrim) - antibiotic

Tacrolimus*** - graft versus host disease prevention

Ursodiol - prevention of hepatic sludge/Veno-Occlusive Disease

Vancomycin - antibiotic

* completed
** starts one day after transplant
*** starts one day before transplant

Day -3 (Part 2)

Hunter hit a wall this morning with his chemotherapy. He got very upset, basically inconsolable, minutes before the nurse hooked him up to today's ATG dose. He complained of mouth pain, which is not unusual, as he will develop mucositis. His blood pressure dipped several times, he continues to have hives over his face, neck, groin and thighs, and his temperature reached a high of 104.8. The nurse immediately gave him Benadryl, Reglan (anti-nausea), Tylenol and morphine to calm him. He fell back asleep quickly and he's napped most of the day. A doctor from the pain team came in to evaluate Hunter afterwards. She hooked him up to a morphine drip and the team will monitor him closely for the duration. We took him to his weekly chest x-ray and to have a bath while he was awake briefly this evening. He receives his third dose of Cytoxan tonight at 10:00.

Day -3

Hunter decided to stay awake until 11:30 last night. He was somewhat delirious. He kept demanding, "Coffee, daddy! I want my coffee! Give me my coffee! Daddy?!" Then at 11:30 it was like someone hit a switch, he was out like a light.

He's been asleep ever since. His blood transfusion after his dose of Cytoxan went well. We will find out what his blood counts are during morning rounds. Hopefully, everything will be ok with his platelet transfusion yesterday and blood transfusion last night.

He is a little fussy when having his labs drawn from his Line or when having his diaper changed but he doesn't actually wake up. He's been talking in his sleep some, reciting his ABCs or counting to ten. Our night nurse was kind enough to change most of his diapers so that I could sleep, or should I say attempt to sleep?

He has a bit of a fever again this early morning so the nurse gave him some Tylenol. They would like to get his fever down some before chemo begins. Hunter's next dose of ATG is scheduled for 8:00 this morning. They will infuse it at a faster rate since he "tolerated" it well yesterday. Today it will last four to five hours.

Saturday, September 19, 2009

Day -4

Hunter rocked like a star for most of his ATG* infusion today. It wasn't until the seventh hour that he hit a wall, spiked a fever and needed an additional nap. Unfortunately, as he was finishing the dose of ATG, he got on all fours and threw up several times. The nurse gave him some Benadryl, Tylenol and an anti-nausea medication after we cleaned him and his crib. Hunter's fever hasn't completely subsided, but he seems more comfortable. Round two of Cytoxan begins at 10:00 pm. He will receive a blood transfusion afterwards because some of his blood counts are low due to the chemotherapy.

* ATG is a medicine made from horse serum that contains antibodies that help suppress the immune system. It helps to prevent the body from rejecting the new bone marrow cells from the donor. Also, ATG is used to treat graft-versus-host-disease. Some of the common side effects are fever, chills, rash or hives, decrease in white blood cells and platelet counts, and increased risk of infection.

Day -5/Day -4 ("Welcome to chemo!")

DAY -5

4:00 pm IVIG infusion (2 hours)

6:00 pm Pre-Cytoxan hydration (4 hours)

10:00 pm Cytoxan (1 hour)

10:30 pm Hunter threw up twice ... Our nurse walked in and said, "Welcome to chemo!"

DAY -4

2:30 am Hunter (finally) fell asleep

7:00 am ATG skin test

8:20 am Platelet infusion (1/2 hour)

9:00 am Hunter woke up ... in a good mood!

9:35 am ATG (8 hours)

Friday, September 18, 2009

Day -5 (Diaper Rash)

Hunter woke up out of his Benadryl haze at 1:00 am. He stood up in the middle of his crib and said, "I itching." I guess I didn't respond fast enough since I was out cold. He started yelling, "I itching! Itching! ITCHING!" I opened the door to our room, took one look at our nurse, pointed back at Hunter and said, "He's itching." She must not have responded fast enough because in my own personal haze I started saying, "He's itching! Itching! ITCHING!"

We changed his diaper and checked out his rear end. It's a little pink but doesn't look too bad yet. The nurse brought us some softer wipes, a cleaning spray and a diaper cream. He suffered only one other itching episode at 2:30, where he demanded I take his diaper off. He settled down for the rest of the night with a diaper change and some fresh cream. However, his itching must be serious because he is on Benadryl and Atarax.

He woke up this morning in a good mood. He gave his night nurse several hugs goodbye and told her, "Go. Go now." Also, upon meeting his day nurse, he began tickling her in inappropriate places. Luckily, he's only two.

He begins Cytoxan tonight at 10:00. We are bracing ourselves for any potential side effects.

Thursday, September 17, 2009

Day -6 (Part 2)

Hunter's night nurse just informed me that he will actually have another dose of Busulfan at 2:00 am. Luckily, he is fast asleep.

Day -6

Hunter was moved to a larger suite early this morning. We have no complaints about that.

He has one more dose of Busulfan scheduled for 8:00 this evening. Tomorrow night he begins his second chemotherapy drug, Cytoxan.

He continues to do well overall, but his appetite is slowly dissipating.

Wednesday, September 16, 2009

Day -7

Hunter's third day of chemo (Busulfan) has been uneventful so far. However, yesterday he showed signs of infection around his Central Line, general redness and irritation. The doctors now run antibiotics (an hour in length) after every dose of chemo. Today the area around his Line seems much improved. The dressing must bother him because whenever you look away from him he starts scratching it.

He eats well, perhaps a bit more particular about his food choices, but he's stopped drinking almost completely. He remains uninterested in milk and juice of any sort, which used to be a special treat. Subsequently, he receives IV fluids for much of the day and night. The chemotherapy drugs are hard on his kidneys so the doctors want to make sure they are constantly flushed out. We change diapers regularly and, at times, still can't keep up with his output. Hunter actually leaked through two diapers/sets of pajamas last night.

He remains a trooper and as charming as ever. We have two volunteers who will begin working with our family regularly next week. Hunter met them on Monday. One of the women is Allison. Hunter decided that she must be Alice in Wonderland. Also, we have had the same nurse, Amber, the past two days. Hunter decided that her new name is Hamburger. What can we do but laugh?

Tuesday, September 15, 2009

Day -8

Hunter was awake from 4:00 until well after 6:00 this morning. I mean really awake. I had to tap into my Supernanny teachings since he was doing anything he could to get my attention as I tried to sleep on the futon (if you can call it that) next to his jail cell (crib). Every time I even breathed he whispered, "Hi. Hi Daddy." I would have laughed if it wasn't so painfully early in the morning. He must have bounced off every bar of his crib in his excitement. I had to get up several times to unwrap him from his IV lines. Supernanny would have been proud that I refused to make eye contact with him!

Currently, he is out cold. A semi could drive through his room and he wouldn't move. Today's chemo starts now ...

Monday, September 14, 2009

Day -9 (Countdown to Day Zero/Transplant)

Hunter is currently on the third dose of his first chemotherapy drug, Busulfan. He is scheduled to receive a dose (which lasts two hours) every six hours for the next three days, four days total. He seems no worse for wear so far. The main side effect that accompanies Busulfan is nausea, however they give him anti-nausea medication before each dose.

He remains as outgoing as ever and has already won over several nurses. His speech and vocabulary are expanding daily and he honestly thinks he's a comedian. He's definitely keeping us on our toes with his constant energy and exuberance.

Sunday, September 13, 2009

Admitted ...

Hunter was admitted to Children's Hospital this afternoon at 4:00. The staff is running a variety of final tests prior to the start of chemotherapy tomorrow (Monday). His hospital room is a fairly large one person suite and the unit has several areas for him to play. He even has the opportunity to ride age appropriate bikes whenever he likes. Although we're not quite sure how that is going to work since he will be hooked up to an IV most of the time.

Currently, Hunter is in his crib, which looks like a toddler jail cell, reading a book to himself while receiving an IVIG treatment. Unfortunately, it doesn't look like he will be able to fall asleep anytime soon since the nurse must take his vitals every fifteen minutes for the next hour.

Saturday, September 12, 2009

All is well after a very long Friday ...

7:45 am Hunter ate his last meal prior to surgery


11:45 am Hunter drank his last cup of apple juice


2:45 pm We checked into our exam room at Children's Hospital


6:45 pm We (finally) spoke with the surgeon regarding both procedures


7:45 pm Hunter was put under anesthesia


9:00 pm We spoke with the surgeon while Hunter was in the recovery room


9:50 pm The recovery nurse carried a crying Hunter to us
She said, "He woke up, took one look at me and burst into tears."


10:05 pm Hunter downed a cup of apple juice and two popsicles


10:35 pm We were discharged from Children's Hospital


10:45 pm We arrived at our apartment at the Ronald McDonald House


11:00 pm Hunter ate wheat thins and strawberries and drank a cup of milk


11:15 pm Hunter went to sleep

Thursday, September 10, 2009

Infused ...

Hunter did extremely well at his infusion today. His number of platelets jumped from 11,000 to 270,000, which makes for a much better situation heading into tomorrow's (Friday's) surgery. An impressive feat was Hunter going from 6:00 am to 7:15 pm without a nap. Admittedly, there were some tears and a temper tantrum or two, but overall he kept it together.

Hunter must stop eating by 8:00 am tomorrow. He is allowed only clear liquids until noon. His check in time at Children's Hospital is set for 2:45. We are not sure what to expect other than another long day and a very tired boy.

Wednesday, September 9, 2009

Forward movement ...

Our phone finally rang at 5:15 pm today. One of our favorite nurses informed us that Hunter passed his viral screening! The pace is about to pick up. Actually it already has. Hunter had another blood draw at 7:00 tonight. He will receive a platelet transfusion tomorrow (Thursday) afternoon. The doctors will place a central line and perform a bone marrow aspiration on Friday. Hunter will be admitted to Children's Hospital on Sunday to begin pre-chemotherapy drugs. His chemotherapy starts Monday, September 14th, and his bone marrow transplant is scheduled for Wednesday, September 23rd.

Tuesday, September 8, 2009

The Bottom Line ...

Hunter's test results tomorrow must be negative for parainfluenza and adenovirus, along with any other virus, or his transplant will be delayed for a third time. We should have the results of today’s nasal wash and throat culture tomorrow or Thursday. If Hunter actually tests negative, the process will speed ahead toward platelet transfusion, line placement, bone marrow aspiration and pre-chemotherapy drugs. If he tests positive for any of the twelve viruses they search for, the process will be delayed, once again relying on the donor’s kindness and flexibility to reschedule.

All of your prayers, positive vibes and/or well wishes are appreciated. Thank you.

Friday, September 4, 2009

Thursday, September 3, 2009

Two isn't always better than one ...

The test results we received today indicated Hunter not only tested positive for parainfluenza, but also tested positive for adenovirus. Adenovirus can potentially develop into viral pneumonia or cause liver problems during transplant. The doctor said going to transplant with adenovirus is "as dangerous if not more dangerous" than going to transplant with parainfluenza.

Hunter is scheduled for an IVIG infusion tomorrow. They will draw blood prior to this to further confirm the adenovirus test result. They will also test a stool sample.

Hunter will have another nasal wash and throat culture on Tuesday. Positive results of any kind will most likely result in another delay.

The doctor also mentioned nasal washes are performed on every pre-transplant patient, and Hunter is the only patient who has tested positive for two viruses in the past month.

We wait and we wait some more ...

Wednesday, September 2, 2009

This is where we're at ...

We received the news we wanted from the donor yesterday afternoon. She is still available to donate, even with the delay. Our new transplant date, which is tentative due to Hunter's influenza, is Wednesday, September 23rd.

Hunter had another nasal wash and throat culture today. It's unfortunate as he now anticipates the procedures. He sheds lots of tears right before and during, but bounces back as soon as it's over. Today, bouncing back included cleaning the nurse's stethoscope with an alcohol pad, as well as saying, "Thank you for my nasal wash!"

We should have the results tomorrow afternoon. I guess we'll hold our breath until then ...

PS. The three of us had lunch with a very close friend from college today, good times.

Sunday, August 30, 2009

The Tweet (dedicated to Robbie R.)

Hunter tested positive for the flu again on Wednesday. However, he seems healthier and healthier every day. We are hoping for a negative test result this Wednesday. Hunter's new transplant date has been "tentatively" set for Wednesday, September 23rd, the day Grandpa and Grandma arrive in Seattle. Hopefully, the donor will confirm her availability this week.

PS. Was that too long for a tweet?

Monday, August 24, 2009

Days go by ...

We met with our BMT team on Friday. They informed us that Hunter has parainfluenza. It is a common flu strain but could potentially cause problems for him during transplant if he isn't fully recovered. Our immunologist suggested we delay the transplant two weeks. However, the infectious disease team suggested we delay the transplant four weeks. Apparently, they must have met in the middle since we learned today that the Scheduling Coordinator asked our donor's center if she can delay three weeks, until September 25th. We have not heard back from the donor yet, but our fingers are crossed that her schedule will permit her to donate to our boy.

Today was a long day. Hunter received an infusion of IVIG*. We arrived at the SCCA before 8:00 am and didn't leave until after 4:00 pm. Honestly, Hunter does extremely well for a two year old who has to sit still with an IV in his arm for that amount of time. He loves the Child Life Specialist because she spoils him with toys, bubbles and coloring materials. She gave him his own coloring book, box of crayons and Play-Doh set to bring back to our apartment.

Overall, Hunter seems well. He had a blast in the game room once we returned to the Ronald McDonald House. He ran around in circles with a toy vacuum and shopping cart while learning how to play frisbee. He will have another nasal wash and throat culture on Wednesday.

* A blood product administered intravenously that contains immunoglobulins (antibodies extracted from the plasma of over a thousand blood donors).

Thursday, August 20, 2009

Back in the Seattle again ...

We arrived in Seattle yesterday as planned. However, we took Hunter directly to the SCCA, which was not part of the plan. Hunter started coughing on Tuesday morning, literally twenty-four hours before our return flight. Initially, we weren't too worried because he didn't show signs of any other symptoms and was not running a fever. The staff ran a nasal wash, throat culture and chest x-ray on Hunter to see if there was reason for concern since he is so close to being admitted to Children's Hospital. After several meetings and an hour in the blood draw lab today, we learned that Hunter has a common type of influenza. We have a meeting tomorrow morning with the BMT team, but honestly we are looking at another delay, two weeks minimum. We are praying that the donor will be able to rearrange her schedule to donate when Hunter is healthy. We are in disbelief at the turn of events, but realize Hunter must be 100% before he begins chemotherapy. We have decided not to return to L.A. this time as leaving family and friends twice already proved difficult enough.

Friday, August 14, 2009

Confirmation

We received good news from the SCCA today. Their laboratory confirmed that Hunter's new donor IS a perfect match.

"Hunter's new donor is a committed 19 year old female, 10/10 match, same blood type/CMV status as Hunter. We can't ask for more than this in a donor."

Now we can return to Seattle without concerns regarding the donor. We will keep you posted!

Sunday, August 9, 2009

Updated Tentative Schedule

Wednesday, August 19th: RETURN TO SEATTLE

Thursday, August 20th: SCCA OUTPATIENT ARRIVAL

Friday, August 21st: DATA REVIEW CONFERENCE

Monday, August 24th: PLATELET TRANSFUSION

Tuesday, August 25th (am): HICKMAN LINE PLACEMENT

Tuesday, August 25th (pm): ADMITTED TO CHILDREN'S HOSPITAL/BEGIN DILANTIN

Wednesday, August 26th: BEGIN CHEMOTHERAPY (BUSULPHAN/CYTOXAN/ATG)

Thursday, September 3rd: DAY OFF

Friday, September 4th: BONE MARROW TRANSPLANT

Hunter's sister, Harper Aaliyah



Although we are disappointed about our return to Los Angeles, we are thrilled to see our daughter. She has grown so much in just two weeks. She's started to crawl and tries her best to stand on her own.

Tuesday, August 4, 2009

Waiting back in Los Angeles ...

We flew back to Los Angeles yesterday after speaking with the BMT team at the Hutch. Under the circumstances, we are happy to be home and reunited with our daughter, Harper. Here are the two most recent emails we received from them explaining the situation ...

First email:

"The donor we requested for product donation was HLA typed in a reputable laboratory, and was a 10/10 match with Hunter. However, the donor, as part of our protocol requirements, provided a fresh blood sample to our laboratory for HLA confirmatory typing to be completed. On Friday, I received an email message from our laboratory informing me that the confirmatory typing for Hunter's donor identified a discrepant typing result with the outside laboratory typing results, for the HLA-DQB1 loci (thus, one antigen mismatch with Hunter). I immediately telephoned our laboratory and had a conversation with our HLA specialist, who assured me that they will be typing this loci again, but felt confident their results were accurate. This is a very unexpected result. The donor's HLA-DQB1 in relationship with the donor's HLA-DRB1 is not even normally seen together."

"The good news is there are more donors that are a 10/10 match with Hunter. I spoke with the registry late on Friday afternoon, and we are moving forward with the donor processes with another excellent donor. This will cause a delay in the transplant date. We are hoping the delay this donor switch causes will not be too terribly long. As soon as we have word from the donor center, I will let you and your family know."

Second email:

"I already have good news. The donor center successfully contacted the new donor by phone. The donor is very excited to plan on moving forward with our donation request. This donor is a 19 year old female, 10/10 HLA match, same ABO Rh and CMV status of Hunter. We are requesting a bone marrow harvest/product transport date (for infusion the same day) of 3-Sept-2009."

If this donor is truly a match we could possibly be headed back to Seattle in a couple of weeks. Our fingers are crossed. Meanwhile, we will try to rejuvenate and enjoy our time with family and friends.