tag:blogger.com,1999:blog-7713721096497473072024-02-18T19:43:40.168-08:00Hunter Bonnet-TaylorOur son, Hunter, was diagnosed with a rare immuno-deficiency disease, Wiskott-Aldrich Syndrome, in August of 2008. He was almost 14 months old at the time of his diagnosis. This blog will follow Hunter's journey as he negotiates the ups and downs of his testing, potential procedures and future outlook.Unknownnoreply@blogger.comBlogger103125tag:blogger.com,1999:blog-771372109649747307.post-90719476633445283392010-02-10T21:49:00.000-08:002010-02-10T21:54:14.554-08:00Day +139 (Happy children ...)<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjRVU8yyaT-JaEl6_ajxFFHWpCo21hhqyPzsHJYYedumzSIsyqUromLtrewWmlfwjCE2WaV8HsJMuTXzQuqpf1tAwRcHmdJa0TWR6ytI4P9do8o3q9dIoIguOz0E57ffnKFrPHGZlRQ/s1600-h/Hunter+1+Feb+2010.bmp"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 320px; DISPLAY: block; HEIGHT: 240px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5436859673316122706" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjRVU8yyaT-JaEl6_ajxFFHWpCo21hhqyPzsHJYYedumzSIsyqUromLtrewWmlfwjCE2WaV8HsJMuTXzQuqpf1tAwRcHmdJa0TWR6ytI4P9do8o3q9dIoIguOz0E57ffnKFrPHGZlRQ/s320/Hunter+1+Feb+2010.bmp" /></a><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj4a9YYaX8xmkAvrm4ClRzxIC8ys9m0r1mcPkwaX7DoFhpAiJK3nUTz7ueQEaZUceaHnBgBmRNYJoPW1HwKbobNOqWAHONprOX0AoREKQ9TBL80W7vaHuJA15OovU6pf7hiRqalWtb5/s1600-h/Harper+1+Feb+2010.bmp"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 320px; DISPLAY: block; HEIGHT: 240px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5436859670139843746" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj4a9YYaX8xmkAvrm4ClRzxIC8ys9m0r1mcPkwaX7DoFhpAiJK3nUTz7ueQEaZUceaHnBgBmRNYJoPW1HwKbobNOqWAHONprOX0AoREKQ9TBL80W7vaHuJA15OovU6pf7hiRqalWtb5/s320/Harper+1+Feb+2010.bmp" /></a><br /><br /><div></div></div>Unknownnoreply@blogger.com3tag:blogger.com,1999:blog-771372109649747307.post-54712932738613223352010-02-01T18:44:00.000-08:002010-02-01T21:45:33.664-08:00Day +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!Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-771372109649747307.post-74272802278225879422010-01-26T17:44:00.000-08:002010-02-01T18:43:53.906-08:00Day +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 <strong>two</strong> 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!<br /><br />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.Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-771372109649747307.post-59110214992854016982010-01-20T11:15:00.000-08:002010-01-20T12:19:29.104-08:00Day +118 (Double trouble ...)<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgUN-HYP5m27E0oM1nABJdnJysMw7aUZYMGWLrPObyStGG8dGf4tbWbYCYWKkac2gvkcdVm4trdNvGEhAb2sxOebUqJJT_BkHmuPF7S930pCmAl12RGjHTc_I3wdJB_kkKG0j6tXmr2/s1600-h/Hunter+and+Harper+2+Jan+2010.bmp"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 320px; DISPLAY: block; HEIGHT: 240px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5428910373857649634" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgUN-HYP5m27E0oM1nABJdnJysMw7aUZYMGWLrPObyStGG8dGf4tbWbYCYWKkac2gvkcdVm4trdNvGEhAb2sxOebUqJJT_BkHmuPF7S930pCmAl12RGjHTc_I3wdJB_kkKG0j6tXmr2/s320/Hunter+and+Harper+2+Jan+2010.bmp" /></a> The moment Hunter and Harper laid eyes on each other for the first time in almost five months!<br /><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgY4xAQ5bWLiRqLX6EkI3Yye1Uju7qhhgxiGV0lZ3jGoI3NwdMPub9Id3RUA-EI20m3vWNLYToVtQ4floNXBg4nkOSDA8tHBpDZyAWXasUWvVBiL5gfP7xCvdi_tkZr0QMTh8qTdLST/s1600-h/Hunter+and+Harper+3+Jan+2010.bmp"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 320px; DISPLAY: block; HEIGHT: 240px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5428910365383777106" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgY4xAQ5bWLiRqLX6EkI3Yye1Uju7qhhgxiGV0lZ3jGoI3NwdMPub9Id3RUA-EI20m3vWNLYToVtQ4floNXBg4nkOSDA8tHBpDZyAWXasUWvVBiL5gfP7xCvdi_tkZr0QMTh8qTdLST/s320/Hunter+and+Harper+3+Jan+2010.bmp" /></a><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiFpzrABs3VagpmJ605TfzbLvwARtOxL9CRvO7IA4kFC-XmbZoVwSMlaJO0cJ1FzUkkC62F50WQ2imFrozYjWOJ8QNvmCFncUymmURCvDyin8kUn_ckJ_DD6hYVZnXhfcNFDvekAyjw/s1600-h/Hunter+and+Harper+4+Jan+2010.bmp"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 320px; DISPLAY: block; HEIGHT: 240px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5428910358480075538" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiFpzrABs3VagpmJ605TfzbLvwARtOxL9CRvO7IA4kFC-XmbZoVwSMlaJO0cJ1FzUkkC62F50WQ2imFrozYjWOJ8QNvmCFncUymmURCvDyin8kUn_ckJ_DD6hYVZnXhfcNFDvekAyjw/s320/Hunter+and+Harper+4+Jan+2010.bmp" /></a><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjGgR-gA-PuGlhFRRAtvjsjO5RJdwni7JpppwWp7pUJR63f0ot77Nib3tdMZBy_K2GVpwBtGydIWSpCsfXaFf0L3XkPZBf14q6KG43hJDFTi1VGs7zdUkeLZUncUwktju7O64A0Q2PF/s1600-h/Hunter+and+Harper+5+Jan+2010.jpg"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 320px; DISPLAY: block; HEIGHT: 240px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5428910351526087458" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjGgR-gA-PuGlhFRRAtvjsjO5RJdwni7JpppwWp7pUJR63f0ot77Nib3tdMZBy_K2GVpwBtGydIWSpCsfXaFf0L3XkPZBf14q6KG43hJDFTi1VGs7zdUkeLZUncUwktju7O64A0Q2PF/s320/Hunter+and+Harper+5+Jan+2010.jpg" /></a><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiW229-3Ojm6HXm_gI8BPbKBTNvP5Zz3MnW24xYQD4muggwnwUi_ChqrXzdYWuzoBKnLQRG9_7Yn4aV_vzhd7mgl7qBraOqGYSDltqlPTt1hIBF7NhhnEedM1ZS0reWsjfxE4BM4Yud/s1600-h/Hunter+and+Harper+6+Jan+2010.bmp"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 320px; DISPLAY: block; HEIGHT: 240px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5428909931299401778" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiW229-3Ojm6HXm_gI8BPbKBTNvP5Zz3MnW24xYQD4muggwnwUi_ChqrXzdYWuzoBKnLQRG9_7Yn4aV_vzhd7mgl7qBraOqGYSDltqlPTt1hIBF7NhhnEedM1ZS0reWsjfxE4BM4Yud/s320/Hunter+and+Harper+6+Jan+2010.bmp" /></a><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiIktuPOqIcTV8st3Mk9MPfVfTWLNqASslZGD_CBHdsG0K2m6DgtmKchj8VIRsa5MJJL8c4hdyqJMOX81_wSTA_ujecsCmpTIRB2e-XdEcn5jw_eZrPIrG_sQir1xqI1sWNIL0lsjnw/s1600-h/Hunter+and+Harper+7+Jan+2010.bmp"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 320px; DISPLAY: block; HEIGHT: 240px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5428909922123048450" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiIktuPOqIcTV8st3Mk9MPfVfTWLNqASslZGD_CBHdsG0K2m6DgtmKchj8VIRsa5MJJL8c4hdyqJMOX81_wSTA_ujecsCmpTIRB2e-XdEcn5jw_eZrPIrG_sQir1xqI1sWNIL0lsjnw/s320/Hunter+and+Harper+7+Jan+2010.bmp" /></a><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhvqHuzorMwGoE-mwPYO28mGfEzioFvWczs25MDiG8LeTn9RXHUEjTpdIoSMIXbs7TPFdG-o1MlOz8f3rddc5mVeJAj-KxxKReXNkyVkHeQO3MH3U6c5qzUoKL-msLewZ2kX58HSqjT/s1600-h/Hunter+and+Harper+8+Jan+2010.bmp"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 320px; DISPLAY: block; HEIGHT: 240px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5428909916314879650" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhvqHuzorMwGoE-mwPYO28mGfEzioFvWczs25MDiG8LeTn9RXHUEjTpdIoSMIXbs7TPFdG-o1MlOz8f3rddc5mVeJAj-KxxKReXNkyVkHeQO3MH3U6c5qzUoKL-msLewZ2kX58HSqjT/s320/Hunter+and+Harper+8+Jan+2010.bmp" /></a><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCTHoOwj3C9CYImuWiwm86vfBqP8uY30f6a3U_2EQT0o8DmWTJU2uflTK7N9299wk6fzjkfM4QeFylk0BRFRnF-jwDTHf8wSttxSYB1qpQpAc92ABBFFHPTAUVprbVj1cALSd8l1HF/s1600-h/Hunter+and+Harper+9+Jan+2010.bmp"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 320px; DISPLAY: block; HEIGHT: 240px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5428909911802395138" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCTHoOwj3C9CYImuWiwm86vfBqP8uY30f6a3U_2EQT0o8DmWTJU2uflTK7N9299wk6fzjkfM4QeFylk0BRFRnF-jwDTHf8wSttxSYB1qpQpAc92ABBFFHPTAUVprbVj1cALSd8l1HF/s320/Hunter+and+Harper+9+Jan+2010.bmp" /></a><br /><div></div></div></div></div></div></div></div></div>Unknownnoreply@blogger.com3tag:blogger.com,1999:blog-771372109649747307.post-78066158396379173302010-01-19T20:37:00.000-08:002010-01-19T22:55:44.489-08:00Day +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.<br /><br />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 <em>The Night Before Christmas</em> 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!<br /><br />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.<br /><br />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.<br /><a href="http://www.caringbridge.org/visit/ashleykealohaaven">www.caringbridge.org/visit/ashleykealohaaven</a>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-771372109649747307.post-25849088715379642152010-01-10T16:58:00.000-08:002010-01-10T21:57:03.184-08:00Day +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 <strong>zero</strong>) 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 <strong>and</strong> 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.Unknownnoreply@blogger.com5tag:blogger.com,1999:blog-771372109649747307.post-66815704549047113542010-01-03T23:06:00.000-08:002010-01-03T23:11:08.677-08:00Day +101 (Peas in a pod ...)<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjaT1dDJuYMnL-fdbYHNQX3DLKRimemuXvCNDd-nIjGw5jp-m6sKpwOCK_-kksiKED2zhN1eU58oXRdw6wmwxcJFkyuwP3KW4r3qjnIU-NdkQpmWjfJ_QJFGUJjry468oM_CuUGy2C/s1600-h/Hunter+and+Harper+Jan+2010.jpg"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 320px; DISPLAY: block; HEIGHT: 240px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5422777880019980898" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjaT1dDJuYMnL-fdbYHNQX3DLKRimemuXvCNDd-nIjGw5jp-m6sKpwOCK_-kksiKED2zhN1eU58oXRdw6wmwxcJFkyuwP3KW4r3qjnIU-NdkQpmWjfJ_QJFGUJjry468oM_CuUGy2C/s320/Hunter+and+Harper+Jan+2010.jpg" /></a><br /><br /><div></div>Unknownnoreply@blogger.com6tag:blogger.com,1999:blog-771372109649747307.post-27447699504703732042010-01-03T20:02:00.000-08:002010-01-04T06:56:04.945-08:00Day +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!<br /><br />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.<br /><br />Wednesday - Hunter received IVIG. (We were <strong><em>extremely</em></strong> 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.<br /><br />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.<br /><br />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.<br /><br />Saturday - We spent much of the day getting reacquainted and trying to smooth out a routine.<br /><br />Sunday (today) - Hunter and Harper had their first ever bath together!Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-771372109649747307.post-66385569178909100662009-12-27T19:13:00.000-08:002009-12-27T21:55:13.363-08:00Day +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!<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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!<br /><br />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!Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-771372109649747307.post-8113153664174962562009-12-21T19:29:00.000-08:002010-01-20T12:23:36.424-08:00Day +88 (A peek inside the photo shoot ...)<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgD3l_3OOJQR7-XUM_xHCuI7CCk0FNDGwiI-A2OQPxAtLKcrVIzY4pE3iAm_TeOjKQnw3EowHDtIS6VWyefuF8nRHilq0lhSVGK-6CwuHICzbm8rqFYnAfh_9Xb_N_a7WUaFiSnodZj/s1600-h/20091217_223.JPG"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 320px; DISPLAY: block; HEIGHT: 214px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5417919039673932642" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgD3l_3OOJQR7-XUM_xHCuI7CCk0FNDGwiI-A2OQPxAtLKcrVIzY4pE3iAm_TeOjKQnw3EowHDtIS6VWyefuF8nRHilq0lhSVGK-6CwuHICzbm8rqFYnAfh_9Xb_N_a7WUaFiSnodZj/s320/20091217_223.JPG" /></a><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjzcRMmX5GjjFhiSSxJcUFRWT1p_Snki34LhGkDkg6_RN5b_blg-cJUH7GoYaUGz8ZVMV-Nit3eu_pPVu17z2qgn9yZO6jZHmArgiz6VlcvN5uktw9MLFvH8rkNyVOKHsDxWhyphenhyphen0wLfH/s1600-h/20091217_246.JPG"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 214px; DISPLAY: block; HEIGHT: 320px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5417916371085822530" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjzcRMmX5GjjFhiSSxJcUFRWT1p_Snki34LhGkDkg6_RN5b_blg-cJUH7GoYaUGz8ZVMV-Nit3eu_pPVu17z2qgn9yZO6jZHmArgiz6VlcvN5uktw9MLFvH8rkNyVOKHsDxWhyphenhyphen0wLfH/s320/20091217_246.JPG" /></a><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikALoAYEkTiZ8x35UUsgPRaeAcb3RyNyqQ8jHnlq7JNcXrGc0-66C9rcM6dkf8H_5dPmeK3OqWl9dT_zxFWvOdiL13AYdO3FXZ_2W5oOwBQuXRNUw8Y-fjWLcDhHS6kpHHd06vh6Cb/s1600-h/20091217_248.JPG"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 214px; DISPLAY: block; HEIGHT: 320px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5417915276766387554" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikALoAYEkTiZ8x35UUsgPRaeAcb3RyNyqQ8jHnlq7JNcXrGc0-66C9rcM6dkf8H_5dPmeK3OqWl9dT_zxFWvOdiL13AYdO3FXZ_2W5oOwBQuXRNUw8Y-fjWLcDhHS6kpHHd06vh6Cb/s320/20091217_248.JPG" /></a><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJLKy0B07UMPaWtMHnn22MXwMgu9sQHF2NDyD5O622c6vH-1tWidPm4v_90mupHf8APCXsXLrbDq36-TAsFYYdzir1fzS1y2ZiXPX3N-uK5Tdeyz0XefriihUX5jxSuGJv8YwxU_RO/s1600-h/20091217_243.JPG"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 320px; DISPLAY: block; HEIGHT: 214px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5417912069022842802" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJLKy0B07UMPaWtMHnn22MXwMgu9sQHF2NDyD5O622c6vH-1tWidPm4v_90mupHf8APCXsXLrbDq36-TAsFYYdzir1fzS1y2ZiXPX3N-uK5Tdeyz0XefriihUX5jxSuGJv8YwxU_RO/s320/20091217_243.JPG" /></a><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDRiol0bWSIeDNlAAl1dUtjD-b1qY_iZznxwd2ODGFcvkM-ARB0PLC7mBSB8PieWgkRzBAA5uW9u4zlYDlVvSYxzbu0QKVcLPCGQdrBI4GaHHybvs4J4xFp4GRmVvAg2bHehfIOk4E/s1600-h/20091217_249.JPG"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 320px; DISPLAY: block; HEIGHT: 214px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5417910769650853714" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDRiol0bWSIeDNlAAl1dUtjD-b1qY_iZznxwd2ODGFcvkM-ARB0PLC7mBSB8PieWgkRzBAA5uW9u4zlYDlVvSYxzbu0QKVcLPCGQdrBI4GaHHybvs4J4xFp4GRmVvAg2bHehfIOk4E/s320/20091217_249.JPG" /></a><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQyk138m4p8Zx8ygJb6Tp1CfJBxAT2GNYmKIj9k5wjDzoJILgxmZkSWu_SzaEBRpm3xKgchEldJBkLNWoc2XuQL8Y6-q-Ayr-PXeUePIEQE0kg972qvRKmI4t56REcDv3jh5wNSKVv/s1600-h/20091217_264.JPG"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 320px; DISPLAY: block; HEIGHT: 214px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5417908965566791586" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQyk138m4p8Zx8ygJb6Tp1CfJBxAT2GNYmKIj9k5wjDzoJILgxmZkSWu_SzaEBRpm3xKgchEldJBkLNWoc2XuQL8Y6-q-Ayr-PXeUePIEQE0kg972qvRKmI4t56REcDv3jh5wNSKVv/s320/20091217_264.JPG" /></a><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgckr5vKiC1L764qU4eAm-Hajz3ojN1WhTr1M1FtQBHYZqS9xjvnDw3n_nu3Mhwu45kVajxGumlOxJa-T3mQizYcS26Hs7a8IyjVxKnvjYiXgQNxwJviok_HrUn-3ipMmbFU7gdYNlK/s1600-h/20091217_271.JPG"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 320px; DISPLAY: block; HEIGHT: 214px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5417907626504807234" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgckr5vKiC1L764qU4eAm-Hajz3ojN1WhTr1M1FtQBHYZqS9xjvnDw3n_nu3Mhwu45kVajxGumlOxJa-T3mQizYcS26Hs7a8IyjVxKnvjYiXgQNxwJviok_HrUn-3ipMmbFU7gdYNlK/s320/20091217_271.JPG" /></a><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjWKErL6MqJ452UsGngIYTgiB2JGJbiV_ddZ8E86xDn4WKIfnD2_c_9eden2lLqU5TCfYfrgSRbedus91JBime5fKMMsC3y3aJvpVAcVtpkAUiEHdbBWnfIudpflOQYVDtAKA-7SMKs/s1600-h/20091217_288.JPG"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 214px; DISPLAY: block; HEIGHT: 320px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5417906449940658338" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjWKErL6MqJ452UsGngIYTgiB2JGJbiV_ddZ8E86xDn4WKIfnD2_c_9eden2lLqU5TCfYfrgSRbedus91JBime5fKMMsC3y3aJvpVAcVtpkAUiEHdbBWnfIudpflOQYVDtAKA-7SMKs/s320/20091217_288.JPG" /></a></div></div></div></div></div></div></div>Unknownnoreply@blogger.com3tag:blogger.com,1999:blog-771372109649747307.post-58839020612252475572009-12-20T11:41:00.000-08:002009-12-21T20:58:55.797-08:00Day +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!<br /><br />Wednesday - We received a visit from a nurse who has become a dear friend. She even brought us dinner!<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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.Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-771372109649747307.post-82493000050452953582009-12-16T09:27:00.000-08:002009-12-16T22:26:20.229-08:00Day +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.Unknownnoreply@blogger.com4tag:blogger.com,1999:blog-771372109649747307.post-50186262147143060772009-12-14T19:29:00.000-08:002009-12-15T07:28:22.762-08:00Day +81 (Good news so far ...)<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwGvJZb5pUd6KRzOTTWSmNODtZq44douip38AWIy5p2zlfIsLYn0qd0c8J052KNR2hSPVaftXF4641kg5vt7wqAQZsK111JKBnzO26aw5neEn7T3eRsPMlNVL0YYE6KJmFGuEUlakj/s1600-h/Hunter+5+Dec+09.jpg"><img style="MARGIN: 0px 0px 10px 10px; WIDTH: 320px; FLOAT: right; HEIGHT: 240px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5415332121939301650" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwGvJZb5pUd6KRzOTTWSmNODtZq44douip38AWIy5p2zlfIsLYn0qd0c8J052KNR2hSPVaftXF4641kg5vt7wqAQZsK111JKBnzO26aw5neEn7T3eRsPMlNVL0YYE6KJmFGuEUlakj/s320/Hunter+5+Dec+09.jpg" /></a>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 <strong>punish</strong> 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.<br /><div><div>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.</div><div>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. </div><div>P.S. I had to include this picture of Hunter baking a cake for his dad's milestone birthday yesterday!</div></div>Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-771372109649747307.post-63657451387012525022009-12-09T20:08:00.000-08:002010-01-20T12:27:22.197-08:00Day +76 (Ready? Set? Go!)<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_mCm0lEPDwvet3_QKfdJcgqqAEl5D3UnqKxN0LEQo5opQebDXQ4pn1A4w0yAsHd45S2feYgsmLiKkXMR7xjdNOINws4kuQ50yZVigjfv1MaF9TNoxJI6xqGrh9DLLQGV8ku047P-u/s1600-h/Hunter+1+Dec+09.jpg"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 320px; DISPLAY: block; HEIGHT: 240px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5413454992960438530" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_mCm0lEPDwvet3_QKfdJcgqqAEl5D3UnqKxN0LEQo5opQebDXQ4pn1A4w0yAsHd45S2feYgsmLiKkXMR7xjdNOINws4kuQ50yZVigjfv1MaF9TNoxJI6xqGrh9DLLQGV8ku047P-u/s320/Hunter+1+Dec+09.jpg" /></a><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi01VP3GCklGTKLuvnUGOvzUCI1U5AkCvrASeFGe6MTIRJBuXb7fZny7PGWT3r5cnto9UyC3l0vwgZw4S0eAQVuMms0AZGo3nrTSceiO7dChunzlDSmXF5IJykl8qp1jB2HRa6S6fxO/s1600-h/Hunter+2+Dec+09.jpg"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 320px; DISPLAY: block; HEIGHT: 240px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5413454990045727010" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi01VP3GCklGTKLuvnUGOvzUCI1U5AkCvrASeFGe6MTIRJBuXb7fZny7PGWT3r5cnto9UyC3l0vwgZw4S0eAQVuMms0AZGo3nrTSceiO7dChunzlDSmXF5IJykl8qp1jB2HRa6S6fxO/s320/Hunter+2+Dec+09.jpg" /></a><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJH_r7dKrgtW7ZUPUDXXqV4R9wfRd0MOwVVdE1VudYRQa3m_M3yjjZHX87iJmY8NZkVwummtSuOWeiePJAJfaj_iNiKpbr9vk2B8QjnjFkMV_bb_PCwibBoAdJYrLhJBn3XMewqsom/s1600-h/Hunter+3+Dec+09.JPG"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 320px; DISPLAY: block; HEIGHT: 240px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5413454986515723842" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJH_r7dKrgtW7ZUPUDXXqV4R9wfRd0MOwVVdE1VudYRQa3m_M3yjjZHX87iJmY8NZkVwummtSuOWeiePJAJfaj_iNiKpbr9vk2B8QjnjFkMV_bb_PCwibBoAdJYrLhJBn3XMewqsom/s320/Hunter+3+Dec+09.JPG" /></a></div></div>Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-771372109649747307.post-92864669107750992009-12-08T19:28:00.000-08:002009-12-08T22:40:48.001-08:00Day +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 <strong>if</strong> all goes well (knock on wood) we could potentially and unexpectedly be home for some part of the Christmas/New Year holiday. <br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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.Unknownnoreply@blogger.com3tag:blogger.com,1999:blog-771372109649747307.post-22617881915068798742009-12-07T19:26:00.000-08:002009-12-07T21:13:11.882-08:00Day +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 <em>why</em>. 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 <em>why</em> 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.<br /><br />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 <strong>long</strong> 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.<br /><br />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.<br /><br />P.S. Hunter's platelet count last Friday was 140,000!Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-771372109649747307.post-73468645804759843822009-12-04T15:10:00.000-08:002010-01-20T12:31:20.543-08:00Day +71 (Pictures from Harper's 1st Birthday ...)<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCFxcpRRhPmyWP2LWLSVnKwYOw2kmuzWQXWX8tkUgg789-5WETQ33Ujiw4VZFhATTLBvuUmpIr3FwA8BwKjq4NiEOjZtUgCNR3hoJj1T9Vi94k2PAyy9XsjeyORsawU1Eg8OEnWS7D/s1600-h/Harper+Bday+1.jpg"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 320px; DISPLAY: block; HEIGHT: 240px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5411522793961066882" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCFxcpRRhPmyWP2LWLSVnKwYOw2kmuzWQXWX8tkUgg789-5WETQ33Ujiw4VZFhATTLBvuUmpIr3FwA8BwKjq4NiEOjZtUgCNR3hoJj1T9Vi94k2PAyy9XsjeyORsawU1Eg8OEnWS7D/s320/Harper+Bday+1.jpg" /></a><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh86XEtE0axL_fPac2EFHe15rPj1LNsWUy8bFXx3Lp4mmwWQovybY00QYrPbaO5QjgrCeVtRxzqK_bnnNhAtur5WtSXqtup6IsUKj1CXvBadOcMhPF-gmpi1-fUh_H40IxtNzxPNRXe/s1600-h/Harper+Bday+2.jpg"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 320px; DISPLAY: block; HEIGHT: 240px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5411522789294782130" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh86XEtE0axL_fPac2EFHe15rPj1LNsWUy8bFXx3Lp4mmwWQovybY00QYrPbaO5QjgrCeVtRxzqK_bnnNhAtur5WtSXqtup6IsUKj1CXvBadOcMhPF-gmpi1-fUh_H40IxtNzxPNRXe/s320/Harper+Bday+2.jpg" /></a><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRuFMrERB6miFo5MbI1kZVfBwaJfh7AsVx7hH-MovzIv5gQ8y3OCPJ7-im-Q9TSubMMzjylV4S3rcKkLSIM_hJ7K9ZnN_XN-ZNSSe7eE6t2-2Qelt6KzBYUsH5YlmpI-GnbODXbmzs/s1600-h/Harper+Bday+3.jpg"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 320px; DISPLAY: block; HEIGHT: 240px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5411522785684385250" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRuFMrERB6miFo5MbI1kZVfBwaJfh7AsVx7hH-MovzIv5gQ8y3OCPJ7-im-Q9TSubMMzjylV4S3rcKkLSIM_hJ7K9ZnN_XN-ZNSSe7eE6t2-2Qelt6KzBYUsH5YlmpI-GnbODXbmzs/s320/Harper+Bday+3.jpg" /></a><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEivYagCYJubKk-Y1S_Yx3-ze2X-P4NwOf0bJYQ8WtKc82U2OxTQA57IwwlxUX0LD7v8Jl01-94n9bJOQGnAsP0MvY7cYN1sKqprRoR6f3MVjc6RHzA0EmdPyeh4B4MALJWr1bqu_jRQ/s1600-h/Harper+Bday+4.jpg"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 320px; DISPLAY: block; HEIGHT: 240px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5411522779974685218" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEivYagCYJubKk-Y1S_Yx3-ze2X-P4NwOf0bJYQ8WtKc82U2OxTQA57IwwlxUX0LD7v8Jl01-94n9bJOQGnAsP0MvY7cYN1sKqprRoR6f3MVjc6RHzA0EmdPyeh4B4MALJWr1bqu_jRQ/s320/Harper+Bday+4.jpg" /></a></div></div></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-771372109649747307.post-2148806672177920312009-12-03T15:04:00.000-08:002009-12-03T23:24:36.505-08:00Day +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.<br /><br />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!"<br /><br />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.<br /><br />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.<br /><br />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. <a href="http://www.caringbridge.org/visit/ashleykealohaaven">www.caringbridge.org/visit/ashleykealohaaven</a>Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-771372109649747307.post-50116068562934494412009-11-30T19:59:00.000-08:002009-11-30T20:37:23.930-08:00Day +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.<br /><br />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.Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-771372109649747307.post-74337083539597398092009-11-26T18:12:00.000-08:002010-01-20T12:39:11.126-08:00Day +63 (Thankful for a cure ...)<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjN2BL3rH_-yqODhD62wXjLfvrufVhPo8EUzxzlmcWZh2hjmRyh3SPY6DbSOHqOITcCXeVHolSa4JYU3OHvfN4geUKeHqUx1MsSzN57623ZvcxjBZ9AqmjuQBaceK80Ort0hwYI0zn1/s1600/100_1351.JPG"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 320px; DISPLAY: block; HEIGHT: 240px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5408603341934131810" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjN2BL3rH_-yqODhD62wXjLfvrufVhPo8EUzxzlmcWZh2hjmRyh3SPY6DbSOHqOITcCXeVHolSa4JYU3OHvfN4geUKeHqUx1MsSzN57623ZvcxjBZ9AqmjuQBaceK80Ort0hwYI0zn1/s320/100_1351.JPG" /></a><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjN94dcG6SbucYaliTdlAtQgIxLxHDPJ-vZu7dvAZ9glxhXxRS2F4gygAnni03yFlF0Gx7EPL022jJMcaB2mDbTv1jgBYEAuOHTVObItjKIJZOHZMxtayPdYvzSFlCFbbKf4ckSPcwV/s1600/100_1371.JPG"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 320px; DISPLAY: block; HEIGHT: 240px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5408603333826077586" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjN94dcG6SbucYaliTdlAtQgIxLxHDPJ-vZu7dvAZ9glxhXxRS2F4gygAnni03yFlF0Gx7EPL022jJMcaB2mDbTv1jgBYEAuOHTVObItjKIJZOHZMxtayPdYvzSFlCFbbKf4ckSPcwV/s320/100_1371.JPG" /></a><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiA4Zv3OzRyCRdDBaFyfDcnuzwZMPkNAx2MuYKjLqOdZ8RazVQVN6n_LB0zLdOJ_ZZFHZMFH0la9VLk4_UjcI7uF1LMoKSUvjjO1I-zZm9t_L3AB7ZpmG_0LRGaixROutWXqvwkQM2q/s1600/100_1387.JPG"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 320px; DISPLAY: block; HEIGHT: 240px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5408603325662732450" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiA4Zv3OzRyCRdDBaFyfDcnuzwZMPkNAx2MuYKjLqOdZ8RazVQVN6n_LB0zLdOJ_ZZFHZMFH0la9VLk4_UjcI7uF1LMoKSUvjjO1I-zZm9t_L3AB7ZpmG_0LRGaixROutWXqvwkQM2q/s320/100_1387.JPG" /></a><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEirBcFuGV-uJQHZDJrRLMGIhE8zNfSOOpJzWJKukItnxWYx4Fen9h3Wu8gIhBbUlNHolGz4K-PtF2PmSJR3pn5fzRK7AHOpguM9QyuOVEM8gH2wcZUkVM_HQY7UnWC9FKo5kl6WdgyZ/s1600/100_1390.JPG"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 320px; DISPLAY: block; HEIGHT: 240px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5408603322175522034" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEirBcFuGV-uJQHZDJrRLMGIhE8zNfSOOpJzWJKukItnxWYx4Fen9h3Wu8gIhBbUlNHolGz4K-PtF2PmSJR3pn5fzRK7AHOpguM9QyuOVEM8gH2wcZUkVM_HQY7UnWC9FKo5kl6WdgyZ/s320/100_1390.JPG" /></a></div></div></div>Unknownnoreply@blogger.com4tag:blogger.com,1999:blog-771372109649747307.post-33064383294707311092009-11-25T16:25:00.000-08:002009-11-25T20:54:51.877-08:00Day +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.<br /><br />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.<br /><br />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?<br /><br />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.<br />We are hoping it is a direct correlation of how hard the physical therapists are pushing him. However, better safe than sorry, right?!<br /><br />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.Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-771372109649747307.post-61145520842975662332009-11-19T19:26:00.000-08:002009-11-19T21:07:12.539-08:00Day +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.<br /><br />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.<br /><br />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.<br /><br />(Ghostwritten by Grandma Marcia)Grandma Marciahttp://www.blogger.com/profile/10983880160265043558noreply@blogger.com3tag:blogger.com,1999:blog-771372109649747307.post-72017733781026654822009-11-16T18:58:00.000-08:002009-11-16T20:59:59.006-08:00Day +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.<br /><br />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).<br /><br />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?Unknownnoreply@blogger.com6tag:blogger.com,1999:blog-771372109649747307.post-13171617516186643482009-11-13T18:32:00.000-08:002009-11-13T21:16:06.495-08:00Day +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!<br /><br />P.S. Please, please, please help Hunter (us) send out positive vibes, prayers and well wishes to his (our) friend Ashley!Unknownnoreply@blogger.com3tag:blogger.com,1999:blog-771372109649747307.post-42081509294063570922009-11-10T19:29:00.001-08:002009-11-11T09:22:45.007-08:00Day +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!<br /><br />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.Unknownnoreply@blogger.com2