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.