Day +124 (Waiting patiently ...)

Hunter went to his first IVIG appointment at CHLA yesterday. We weren't quite sure what to expect except different. Well, different is exactly what we got! Our actual appointment time was 10:30 but the scheduling receptionist told us to get there as early as possible. I assumed if we arrived at 9:00, which we did, we would be in good shape. Initially, everything ran smoothly. We sailed through triage and waited briefly before Hunter's Attending Physician examined him. During our brief wait a volunteer we know well asked if we had secured a bed in the Day Hospital (at the other end of the floor). I said we hadn't and he gave me the "that's not good" look. He informed me the beds in the Day Hospital where Hunter's infusion was to take place are first come first serve regardless of your appointment time. What?! Thankfully, he offered to take one of our bags and place it on a bed to "save it" for us. Apparently, if there isn't a bed available when you arrive you must wait in the waiting room for a space to open. However, anyone else waiting can try to secure the same opening. I'm very glad we didn't have to deal with that particular scenario. Anyway, Hunter's exam went well. He completes his steroid taper tomorrow. Although the doctor increased Hunter's GVHD prevention medication, erring on the side of caution. This will lengthen Hunter's Tacrolimus taper from approximately four months to four and a half months. We will discuss Hunter's new schedule after he is reevaluated next Monday. Honestly, I thought we made good time arriving at the Day Hospital by 10:00 but this is where different quickly came into play. In Seattle, each patient has his own infusion room, cubicle or space. The room we entered was set up for five patients. We were the third family in the room and the other two spaces were immediately filled. I'm not sure what the status of the other patients was but we waited two hours before our nurse finally came in the room to acknowledge us, another huge difference. We waited an additional forty-five minutes to begin the infusion, our nurse spending time on Hunter's IV placement, blood draw and premeds. Once his IVIG began everything went well. Hunter was so loopy from the Benadryl that for much of the time he played with the tourniquet the nurse used to place his IV. We were also lucky to have the volunteer Hunter loves entertain him. When all was said and done we were away from home seven and a half hours!

Please know that while I am frustrated about yesterday, I do realize in the bigger scheme Hunter's recovery is progressing without complications for which we are so very thankful. There are families we've met, become close with, and many others we haven't met whose loved ones are losing or have lost their particular battles. My heart goes out to every one of them. Tonight I am thinking of Ashley, Skyyler and Nicole and their families with love and admiration.

Day +118 (Double trouble ...)

The moment Hunter and Harper laid eyes on each other for the first time in almost five months!

Day +117 (Special Saturdays ...)

First let me apologize for not updating the blog in over a week. We have simply spent much of our time adjusting to home life and getting reacquainted with Harper. Hunter seems better with each passing day. However, it is difficult for him to spend a majority of his time inside, needing to avoid crowds and sun exposure. Hunter's steroid taper continues. If everything goes well his last dose will be January 27th. Once Hunter is off steroids he should be able to discontinue his blood pressure medicine as well. The Tacrolimus taper (Hunter's other GVHD prevention medication) will begin the following day, lasting approximately four months.

The last two Saturdays have been quite special and I wanted to take a moment to share. On the 9th we decided to enjoy Christmas together as a family. We put Hunter and Harper down for a nap in their Christmas pajamas and Santa (Grandma) began feverishly stuffing stockings and arranging gifts. When the children woke up Grandma read The Night Before Christmas while Grandpa busily took pictures and videos to document the occasion. Afterwards, the children happily clamoured downstairs to the living room and began rifling through their stockings with a bit of parental supervision. We are quickly learning with brother and sister together there is a definite need to reinforce the concept of sharing. Hunter really thinks everything that is Hunter's is Hunter's and everything that is Harper's is Hunter's too. Harper is not beyond stalking Hunter for what she wants, unrelenting until she gets what she's after. If these two sharing remains our biggest hurdle I'll take it!

This past Saturday, the 16th, we surprised Hunter and took him on an overnight trip to Anaheim. Imagine his face when Ashley, her mom, dad and brother walked into our room! Hunter had absolutely NO idea, I mean NOT a clue, what to do or how to act when his best friends from Seattle returned to the hotel from their day at California Adventure theme park. Ashley and her family flew to Southern California with the Make-A-Wish Foundation to visit Disneyland, California Adventure and Universal Studios. Thankfully, we were able to reserve a room at their hotel, just a few doors down, and spend some quality time with them Saturday night and again Sunday morning. We've only known them for five months or so, but we've become quite close. We consider them family.

Please pray for and send positive vibes to Ashley. After three rounds of chemotherapy she is still fighting with everything she has against a very aggressive form of cancer.
www.caringbridge.org/visit/ashleykealohaaven

Day +108 (What a difference an outpatient clinic makes ...)

It is hard to believe another week has gone by. We so enjoy waking up in our own beds as a family of four. I figured I better share my thoughts on last week's outpatient clinic appointment in Los Angeles before tomorrow morning's appointment. I realize every clinic, hospital, doctor is different, but I now know just how much our family was spoiled in Seattle by the SCCA and Seattle Children's Hospital. Don't get me wrong, everyone we came into contact with last Monday, including old acquaintances, was friendly enough and very helpful. However, the experience was completely different. It will take some time to adjust to the variation in routine. I about passed out when we initially got to the hospital. When we arrived at the greeting desk to pick up our entry badges, the receptionist immediately handed Hunter a mask after learning he was a BMT patient. Honestly, Hunter wearing a mask is not a problem for me, I'm all about my son's personal safety after everything he's gone through in his life. I simply found it strange because in Seattle they only hand you a mask if you (the patient) are sick, not necessarily to prevent you (the patient) from getting sick. Both facilities in Seattle do a great job of screening each patient, family member, caregiver, visitor and employee prior to their entry. If you are a patient who is ill, you wear a mask. If you are anyone other than a patient and you are ill, you are asked to stay away until you are well. I promptly put the mask on Hunter upon realizing there was no (and I mean absolutely zero) screening process. It may have been my paranoia but I heard a sneeze to my left and a cough to my right every few steps our entire walk to the outpatient tower. Unfortunately, it's not a short distance and I literally felt as if I could see the germs floating in the air. Hunter's appointment was in a location we had been previously but the check-in process was slightly different. Thankfully, a "masked" nurse, who coordinated our Los Angeles care, met us as we stepped off the elevator. In the back of my mind I was wondering, "Why is she wearing a mask?" Imagine my surprise when I learned halfway through our opening conversation she was actually ill and at work! That just doesn't happen in Seattle! I panicked when we met Hunter's Attending Physician, social worker and the rest of his team, all in masks. I convinced myself since one of their co-workers was ill they all had to take precautions. Right? Hunter put the Attending through her paces, making sure she checked his ears and mouth, listened to his chest and back, looked over his skin, and felt his belly and scrotum. We spent most of the appointment reviewing his treatment in Seattle and his current medicines, including his steroid taper schedule. If everything continues to go smoothly Hunter will be off steroids completely by January 28th! The highlight of the morning was running into the volunteer, a BMT patient himself, Hunter fell in love with back in June of 2008. Hunter pretended not to remember Joseph, putting on his shy act, but I believe he did because as soon as Joseph left the room Hunter was asking for him. Another difference between Los Angeles and Seattle is the timing of Hunter's blood draw. In Los Angeles his appointment ends with his blood draw. We receive his results later in the day, or in our case last week, the next day. In Seattle Hunter's blood draw was done first, so when we arrived at his clinic appointment the Attending Physician and nurse already had the results. I feel bad Hunter has to receive needle pokes again after having his Hickman Line removed, especially since I forgot the numbing cream. However, Hunter showed me he's set to handle any and all pokes with only the slightest flinch.

Day +101 (Peas in a pod ...)

Day +101 (Reunion ...)

Monday - Hunter had his final blood draw via his Hickman Line. We attended our departure conference where we received a great deal of information, which I will share in a subsequent post. Although, the highlight was we were actually being released from outpatient care in Seattle!

Tuesday - Hunter underwent a brief procedure to remove his Line. I assume things went smoothly because I found Hunter in the recovery room giving kisses to an orange popsicle. He must have been feeling generous as he had a second orange popsicle he was feeding to his "Lamby" security blanket. There has been an overwhelming feeling of relief each time Hunter has come out of anesthesia without any trouble. After we got Hunter dressed we went to visit Ashley and her family. All Hunter really wanted to do was finish his popsicle so Ashley made him comfortable on her bed, loaded him up with napkins and a tv tray and helped him negotiate eating it by coming up with a spoon and plate once it fell off the stick. We were able to spend an hour together before we needed to be at our immunology appointment, the main purpose of which was to discuss potentially switching Hunter's monthly IVIG to weekly subcutaneous injections. However, after performing a trial run with a nurse's assistance, it's safe to say at this point we will be continuing with Hunter's monthly IVIG! Can you say make me want to throw up?! Nasty! The only thing that made this appointment worthwhile was seeing our friends Ryan and Angie ("Ryan's mommy" as Hunter calls her) in the waiting room.

Wednesday - Hunter received IVIG. (We were extremely disappointed when we learned of this appointment within an hour after his Line removal!?) Even though Hunter had not received an actual needle stick in several months, he showed no signs of distress, handling it like the true professional he is.

Thursday - Hunter attended his final physical therapy appointment. We were happy to hear from his therapists he has surpassed his baseline evaluation from July. This particular day was bittersweet. While we were eagerly packing for our flight the next morning, we also shared in many difficult goodbyes with all the wonderful people we got to know during our stay.

Friday (New Year's Day) - We flew back to Los Angeles and were reunited as a family. Hunter did very well on the plane, even wearing a mask, after waking up at 4:30 am for our 7:15 am flight. We left extra early for the airport not wanting to take any chances with TSA since Hunter had close to twenty prescription medications in our carry-on. Hunter was so excited to see Grandpa pull up curbside in "Daddy's car". When we arrived at our house Hunter began reciting which neighbors lived where, his memory as sharp as ever. Thankfully, Harper was delighted to see us when she woke up from her morning nap. One of my bigger fears had been Harper not remembering me (us). However, that fear was quickly erased once she saw me (us), squealed and handed me her "Doggy" security blanket. It was touching to see Harper reaching out of her crib for Hunter and Hunter reaching into Harper's crib for her.

Saturday - We spent much of the day getting reacquainted and trying to smooth out a routine.

Sunday (today) - Hunter and Harper had their first ever bath together!