Wednesday, February 10, 2010

Monday, February 1, 2010

Day +130 (First month home ...)

I almost couldn't believe it when I realized today is February 1st. We returned to Los Angeles exactly one month ago. Hunter has reentered his home life relatively smoothly and continues to do well. However, it appears the end of his steroid taper brought about some 'mild' GVHD of his skin. It mainly affects his face, which is quite 'scaly', for lack of a better adjective. The BMT nurse at our clinic appointment today asked if Hunter bruised his face, which he hadn't, so it's safe to say his 'rash' is noticeable. No amount of Eucerin lotion or Aquaphor ointment makes the slightest difference. Believe me when I say I should own stock in both companies after using them so generously, especially with Grandma Marcia's help. Hunter does not seem itchy, although he woke up the last two mornings with scratch marks on his face. As parents we try to remain calm and not automatically think worst case scenario but that can be hard to do. Unfortunately, simply for the sake of comparing and contrasting, we had a new doctor at today's appointment. Thankfully, Hunter was prescribed a Tacrolimus ointment (good call Leann) and a Hydrocortisone cream, both to be used three times a day. In all honesty, we make it difficult on ourselves by checking every move our current Los Angeles BMT team makes with our former Seattle team. In this case Seattle suggests we use the Hydrocortisone cream as sparingly as possible and for no more than a week. Our next appointment is scheduled for two weeks from today unless Hunter's skin condition worsens or spreads. The conversation about Hunter's Tacrolimus taper has been taken off the table until his skin GVHD stabilizes, which we completely understand. We're pleased they didn't want to put Hunter back on steroids immediately. We know it's a possibility but Hunter is so much happier and less emotionally unstable without them. So are we!

Tuesday, January 26, 2010

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.

Wednesday, January 20, 2010

Day +118 (Double trouble ...)

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

Tuesday, January 19, 2010

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.

Sunday, January 10, 2010

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.

Sunday, January 3, 2010