Just One of Those Days

Momma said there would be days like this....it's just one of those days that I'm feeling a certain kind of way. I went out for a bit to take care of some business that appears more complicated than useful to setup. On my way home, I ran by Barnes and Noble and sat there reading my Nook for about an hour. It felt great to get out in the world and just be. On the way home I sat at the light and tears ran down my face. It probably didn't help that I'd just read half of the Jaycee Dugard book. Just one of those things where in the blink of an eye or through the course of a day your life can change. I sat there thinking about life a year ago, those lovely carefree summer days and I fast forwarded to now, isolated and carefully planned out days and I had my "Yes how quickly things can change" moment. But my faith remains in the fact that the Lord is shouldering all that concerns me and he's working out every aspect of Reya's recovery. I gauge where we'll be one year from today and I'm saying 'Thank You' Lord for the expected end. 'Thank You' that our steps are ordered and in all we must endure you are in the midst and working it out.

Our appt at Hemoc yesterday only took 4.5 hours. The Drs. are slightly concerned by the rollercoaster ride Mireya's white count is taking. They've ordered a test that will give us an idea of the cellular make up and hopefully give them an idea of what's going on. In the meantime she got a dose of 'LMNOP' (GCSF) to try to boost her white cell count.

I'm working on getting out of this funk. As I look around me and see these little smiling faces, I can't dwell in this place long. Celebrating life, celebrating wellness and celebrating God's grace and love.

A New Kind of Freedom

We're happy to be home. It's amazing how Reya's spirits have been lifted. This is a new kind of freedom with many limitations, but we'll take it. We have a lot of 'guidelines' to adhere to and to help us to get through these next 100 days as best we can. The most obvious is she will continue to be a 'masked' girl for much of her time out and about or when having visitors outside of 'the pack'. 'OCD' is our new level of handwashing and sanitizing. It's just best that way without the anxiety of course. You can never wash or sanitize enough. Reya is now able to eat fruits that can be peeled. The one thing she wanted the most while on the Unit was grapes. Peeled grapes are you kidding me? I tried hard to dissuade that request with other yummy fruit offerings, but there is nothing like a Grandmother's love. Nene stood patiently at the sink and peeled several grapes for her girl to enjoy. Ok, so the visual is obviously half the enjoyment. She ate a few, but couldn't get past they fact that they 'looked' different and turned brown quickly. The same thing happened when the children had plums the other day and I had to peel hers. She took a few bites and aborted the mission. She can still have veggies, very well washed and cooked, cooked and double cooked...yum well done veggies. Leftovers beyond one day will not make the cut. No aged cheeses, deli sliced cheeses or meats. Visitors are limited and we need to avoid the woods and crowded places. Oh and staying out of heat and sun are also 'Top Ten'. We 'can' go out to a store, but must make this trip when there are 'less people' there. It's also advised her time outside be somewhere near 7pm-8pm. Imagine the challenge in that with three other kids, activities and just life. I wanted to run out yesterday just to grab a few things, but timing got the best of me. We were all set to go and then I realized it was nearing the lunch hour where countless people would be out. So I said we'll wait a few hours, but then a nap foiled the plan. Fortunately I have such awesome family and friends who are willing to run errands and pick up things that we need.

We also had plans to have our carpet upstairs replaced before Mireya returned home. Household carpets are known breeding grounds for everything we need to eliminate in our lives germs, bacteria, fungus and mold. Our plans were sidelined with Reya's health bouncing back at such a incredible rate (that of which we are thankful for). So pulling up the carpet and having her in that environment right now would be more harmful than the necessary end result. So 'ideally' we'll keep her in the area of the house with hardwood as much as possible and as Dr. Godder says 'surrounded by plastic' that can be wiped down and then of course she sleep and rest in her room. We've had the carpets cleaned which does not eliminate mold, but it will put a small dent in rate of growth of any existing mold. A mold test was conducted on our house which gave us some insight on potential issues and levels inside the house in comparison to the levels outside. The levels came back good, but there were recommendations for a couple of things that are considerations aligned with initiatives we already had dealing with air flow and purification. Plants are another area of contention. I don't have a green thumb so that doesn't have the same level of impact as some of the other items.

We've been in good rotation with our medications both orally and via the line. It takes a lot of focus to remain on task with giving several medications with different doses, three time a day. Not to mention cleaning all those little vials. Her IV medication takes about 3 hours to administer. We're free but pretty much need to remain isolated as best we can from potential health threats and issues. Our home remains our sanctuary and we'll creatively figure out how to allow the other kids to be the kids they long to be within the scope of their sister's limitations. Playdates are great, but it's hard because Mireya 'feels' excluded, so I'm having to come up with some cool and special things 'we' can do while all that other kid fun is going on. It would be nice to find a time and place that she and I can go to. Trust me I'm a resourceful chick so I'll figure out something. But if you have an idea or suggestion, let me know. It's taken a lot more to do all the things we need to, simply because we are all now back in the house and there's so much going on and to coordinate. We'll be pulling out those lists of people who said I can do this or I'm willing to do that and pulling numbers, "Now Being Blessed By #21". God is faithful and Reya's health is continuing to improve. Continue to keep her and our family lifted in prayer as we get acclamatedd and comfortable with where we now are in the process, Day + 25.

Back on the Block

We're back on the Hemoc Block and man it didn't take long to be right back in the flow of things. Reya was in a very upbeat and super jovial mood. Getting through vitals and the draws was a breeze today. We got to see Allison and her Mom. They were in clinic but had plans to come up to Bone Marrow Unit to visit with us and Emily. They were excited to see Mireya discharged from the floor. Allison is doing really well. She just returned from a week long camp sponsored by Special Love and it sounded like a totally awesome time. They gave Mireya the most adorable and fluffly stuffed puppy. It's so soft. We'll have to figure out a name for him. We had a chance to catch up with one another. Mireya enjoyed time 'playing' with Allison. It was so sweet of her to hang out with Reya for a little while. 'Fast Hands' are good for basketball, but not when your rotating through pictures on your camera. I had taken a great picture of Mireya and Allison together and 'accidentally' deleted it. Will have to try again another time.

It was a long day. We were in the clinic for over eight hours. Reya needed a blood transfusion. She has built up some antibodies so the search was on for a comparable blood product. Once they located what was needed, took a little over three hours for the transfusion to complete. Always arrive at the clinic with your bag of tricks full of snacks, a blanket, activities, and anything else to pass the time away. I learned that after our very first appointment. Reya's counts are a little lower than they were upon our release and she will require a new med to be administer via her line at home. There are a few other things to look out for with this infection to ensure it's not GVHD (Graft vs Host Disease). Everything we are seeing is within the scope of expectation, rather things that 'could' occur throughout recovery.

Connor's Heroes was here today and you all know how much I LOVE, LOVE, LOVE them. They are celebrating 'Christmas in July' and are handing out bags of really cool stuff for every child (patient, sibling(s) and friends) in the clinic today. I had a chance to talk with Lisa Spickler Goodwin (the Founder and Managing Director) about the positive impact and how much of a blessing Connor's Heroes is to so many. It really does help to have someone or a group of someone's that know and understand what it is like to endure the reality of 'the diagnosis' and all it takes to rally through treatment and recovery.

We're back in rotation and will be in clinic every other day for check and balances, counts and whatever else is needed. We're praying and thanking the Lord for increase in Mireya's counts and continued increase in her health. Being at home has been a huge lift for her spirits. She is happy and even more vibrant. God is good and continues to show himself through the love and kindness of so many. We love and appreciate it all. Thank you!!!

Free @ Last

Reya is home and we are super excited. As expected it didn't take long for her to eat. I'd been trying since Day 3 to have her drink a those specially picked out Caprisun she loves. She was out of the hospital less than 3 minutes and sucked down a Caprisun and ate a snack. We had 'Breakfast for Dinner' and she managed to eat some of that too. The excitement from the children was the buzz that took us well into the night. Over and over I heard 'I'm so glad to be home' or 'Reya I'm so glad your home'. The twinkle in her eyes and the smile on her face said it all. The children asked to have a sleepover. We had to nix the idea because in the initial days it's important we try to keep them out of one anothers face. That idea turned into a 'free for all' in Mommy and Daddy's room at about 3am. I need a king size bed for such events.

Makinley has not been feeling her best. I had to take her to the Dr. to ensure she doesn't have the infection that Reya developed while in the hospital. It is not uncommon in kids having gone through chemotherapy, but it is very contagious and harmful to the rest of us. We'll have Makinley's lab results by tomorrow. In the mean time we'll do our best to monitor the interaction as best we can.

Leaving the hospital took some doing. Reya has multiple meds to take while at home. This resulted in a few trips to Westbury Pharmacy and phone calls close to closing time at 11pm. All is well, but if you think coordinating Mireya taking 'a few' of the meds by mouth in the hospital was a trick...hmmmm having her take all of them at home by mouth is like coordinating a small circus act.

Masks are a must everywhere. So we did some sticker and mask detail last night. We have a lot of stipulations and criteria to adhere to through this next phase of recovery. As I shared about Allison's procedure we now have to get to and through the '100 day mark'. Some of the eating restrictions have been lifted, but things are still quite restricted at least until we can get through a few more increases in our counts.

Our Little Mi-rey-a of Sunshine (as dubbed by Nurse Tim) is home and we are ecstatic. Getting ourselves in the mix with managing meds, meals and symptoms will take some trial and hopefully little error, but she has responded beautifully up until this point. God is faithful and we're so thankful for her progress. Stay tuned.

Temporarily Delayed

Plans to be discharged tomorrow have been delayed because Reya has an infection. We're adding another antibiotic to the arsenal to work on getting rid of it. She has been extremely tired and wiped out as a result. We should still be able to go home this weekend, barring any other issues. I have striped this room down to bare necessities so when they say go, we have nothing to slow down the process. We are managing to leave here with much more than we came with, so we've separated out some duplicate items received and ones we already have at home to be a blessing to someone else.

Mireya remains in good spirits, but is definitely ready to go home. Her TPN has been decreased considerably to give her the opportunity to eat more. She has been on a mashed potatoes and green beans kick. I can't say that she didn't like those things before, but we ordered this same meal for breakfast, lunch and dinner. Mommy doctored it up a bit and she managed to eat a little. We're happy her eating is showing greater promise today. She keeps telling me she 'wants the food from home'. We'll still have food restrictions once we get home, but I believe she will definitely eat better once she get there. Home is where the heart is and apparently for Reya where the stomach receives it's incentive to be fulfilled.

Thank you so much for all the love, support and prayers. This phase of our journey is coming to a close in swift victory. The infection is simply a blip on the script, that can easily be rectified. Some of the symptoms associated with this infection are similar to those experienced in Graft vs Host Disease, so we're so happy (not that she has an infection), that it is not indicative of GVHD. We continue to believe she will not have any issues at all with GVHD, so we can focus our attention and efforts on the next phase of recovery from home. Continue to keep us in your prayers.

Bolton Family Engraftment Dance

A few of the Nurses have boogied down with us today and one also attempted to sing. Her disclaimer was she could do neither, but kudos to her for going out on a limb to give us such great entertainment. I've given out a few check marks to the awesome Nurses on the Unit dropping it like 'it's hot' and throwing their hands up in the air like it's 'all glory'.

'Funkytown' is one of Mireya's favorite songs, so we threw on the Ipod and went for our own 'Engraftment Dance' Bolton style. Someone had to be the DJ and hold the camera, so Mommy missed being 'caught on tape' but trust me I've been dancing, singing and celebrating all day long!

Engraftment Dance Take 1 and Engraftment Dance Take 2

Enjoy!

Great is Thy Faithfulness

Mireya's had a great week. Her white cell count continues to increase. It is a huge possibility that we can go home very soon, possibly within days (yes days). Of course I'm taking that with a grain of salt until the final word arrives, not to mention there is sooooo much to be done. This is a few weeks earlier than expected, but what a great exception to the plan. God is good!

Reya has continued to experience these 'growing pains', much to her medical teams delight. It's funny to watch her say 'my back hurts' as they look like they want to slap a high five and do the 'Engraftment Dance' which I have yet to see by the way. What hair is left on her little buzzed head is continuing to fall out. Her head is so pretty and smooth. Some nights she ask me to sleep with her and we just cuddle and rub each other's head. Some nights I want to rub that head and make a wish that she will go to sleep. She has been keeping strange evening hours, even without a nap in the day. So we are the crew that sleeps well into the morning.

Another pretty little smooth headed girl was admitted on the floor yesterday. Her name is Emily and she is also 4 years old. She will be having a autologous bone marrow transplant. An autologous BMT is where the patients own bone marrow is used. We went to visit her this evening to see if she wanted to do an activity with us. This in itself if a victory. Mireya has been up and very active in her 'own space', but going out on the floor has been a totally different animal. It usually results in major meltdown, so for her to 'want' to go down the hall and visit Emily was awesome. Emily was in the middle of dinner. My girl is still doing TPN, so the concept of actually eating has been a passing phase. The girls have planned to get together some time tomorrow and play in the Family Room.

I can count on one hand how many times we've strolled the halls. Venturing out usually includes some sort of bribery (I mean reward). Reya's new fascination is Disney World. I'm sure after all of this a trip to the Happiest/Most Magical Place on earth will be warranted. I don't know that it trumps the Ultimate Beach Vacay, but it's definitely up there. Ok...I digress again, so usually if we 'walk' to the Family Room we can look at Disney World Princess You Tube videos on the computer in there. Of course we could do this in the room on my laptop, but she hasn't figured that out yet.

In preparation for transitioning her care at home we need for her to starting eating. This week she has managed a couple bites of yogurt, a french fry and two packaged apple slices. That bone marrow requires more than that to thrive. So they are cycling her TPN off for a few hours a day to give her the chance to try incorporating some things on her own. We've had some great successes this week and know that Reya's progress will continue to be blazing trails because that's the kind of God we serve.

Sing the Praises to the King....All Hail King Jesus (He Reigns Forever)!!!!!