Friends through the Fight

Today was a very special day in two mom's lives that have little girls who are going through heartache and pain way beyond their years. The Shiblaq family has a 6 year old, Leila, who was diagnosed with ALL, same as Olivia, just a few weeks prior to Livi's diagnosis. We met Leila in the hospital upon diagnoses and I have kept in touch with her mom Laura. Well, after much talk about wanting to get together, we finally did. Today, Laura, Leila and Deena (age 3), met us at the park today. We had a great time. Olivia and Leila didn't really connect at first. You could tell they were getting used to seeing someone else who had to go through the same stuff as themselves. Leila, says her mom, usually always wears a bandanna to hide her "fuzzy" head, but Livi takes her hat off every chance she gets. Leila started to warm up to the idea and soon we had two fuzz heads running around together! After the park they stopped by our place. Neither of the girls were feeling that great so they shared Livi's medicine and quckly developed a great bond. Laura and I were both so pleased to see our own daughter's smiling and holding on to eachother with such innocent delight. Rubbing heads and holding hands. It was great. We also enjoyed being able to see another child with the same scars as your own and to hear them using the same terminology that is so foreign to the rest of the world but so common to you. "Be careful of my port!" Laura made me laugh when she said now when her kids play doctor, they also have an older son, they play spinal tap and bone marrow biopsy. Livi calls the pharmacist and orders "5 ml's of bactrum, methotrexate, and 5 milligrams of mercaptopurine." Oh, the joys of leukemia! It was a great day. A wonderful opportunity to give these girls a sense of normalcy amongst themselves. They've both fought a great fight and have much more to go, but these are two girls that will definitely make it through!

Aaron and Deena had a great time too. I've never been able to witness Aaron playing with another little girl before. It was funny. Almost as if he had a crush! TOO CUTE!

Monday Madness

Monday was an interesting day with things not quite going as normally as I would have planned. First off, Livi didn't feel like wearing her mask to the gym (who can blame her, I hate wearing them just to access her and that's only 10 minutes tops) so I had to get creative on how to exercise and keep two kids entertained at the same time. Off to the tennis courts we went. First I had to drive to 2 different gas stations to pump up the tires on my jogging stroller to walk to the park in. (I spent more time driving to the gas stations than it took us to walk to the park!) Our upstairs neighbor, Karen, joined us and once the "pram" was loaded down with the 70lbs of kid weight plus the 4 rackets, balls, lunches, water bottles and...I think that's it, we were set. WHEW! It was the first time in over 20 years for me playing tennis and Karen over 12, but we decided to make the best of it and soon discovered it is much different than racquetball. Go figure! You actually have to have control of your swing! (Karen and I play racquetball at least once a week and are impressed with our progress over the past month or so.) The kids were able to set up camp in a shady corner of the court but after Aaron ate all of his lunch and mine, they became restless. So, they joined in. (They got to use the racquetball rackets.) The kids had fun, and Karen and I got in a decent 30-45 min workout. Afterwards, we let the kids play at the adjoining park before heading home.

Once at home we were contacted by the radiological center for Livi to have a CT scan to follow the progress of her 70% destroyed pancreas. Originally she was going to have to drink barium (nasty!) and not knowing when she was going to start being sick from chemo, I took advantage of an opening they had for that day. It turned out she only had to drink water but it was nice to get it over with. I "quickly" accessed her port, left Aaron with Karen , I thank heaven daily for her, and headed to the appointment at 2:30. She has had several scans, that she does remember, but was still a bit nervous. Taking pictures helped focus her mind on the website and not so much on the tech and his seemingly cluelessness on how to handle a port-a-cath. (It's a darn good thing that I know what to do with them and the procedures and medications needed for them. I even brought my own stuff in case they didn't have the right stuff. Good thing too, he tried to "hep-lock" her but did it completely wrong so I used my supplies to finish her off.

Afterwards for a treat I took Livi to Quiznos and she ate all but 2 bites of a chicken Sammy. YUMM-O!

Delayed Intensification

The CNA, Breezy, is taking Livi's vitals to prep for the Versed and other "doping" meds that Kendra the nurse will be administrating.

Well, we started. Yes that wonderful second to the last phase of chemotherapy for leukemia patients that is commonly referred to as D.I. It lasts 6 weeks and is 4 or five chemo's all put together not even counting the oral meds at home. Actually, the amount of oral meds for some reason seems like a bit of a break compared to what we had been doing, but in actuality it's not. (I plan on doing a post of her med regime at an other date.) I will say that the new meds are back to her steroid, that can cause hunger at strange hours of the night, I will refer you to a blog posted in the first week of June with hotdogs at 2am!!! Also this is the drug that can cause "steroid phsycosis"! Yipeee!!! Oh well, only 6 weeks!

Tuesday was her first round at the new phase and we were told it could take up to 6 hours. With the help of our ward church members, Aaron was more than adequately cared for while Livi and I went to the office. (Bill, once again, was out of town. Those darn elections!) She had yet another Lumbar Puncture with spinal tap, where they test the spinal fluid to make sure it's still clear of cancer cells and then they inject methotrexate(a form of chemo that she has taken orally) into her spine. Nice huh?! I will take the time to mention that the spinal fluid finally flowed freely. Hence the picture, I will apologize, but for me it was exciting! While the versed wares off and she is still seeing two of everyone, they did two more chemo therapies. Vincristine, they pushed into her line/port (in the past this was the reason for her 10lb weight loss), and then an IV drip of doxorubicin. This one was new and is slightly orange in color. They had given Olivia an EKG when she was diagnosed in May as a test to see if she could handle this chemo. From start to finish, we were in and out of there within 3 hours! They really tried to push us quickly as their office was filling up quick. No joke! The waiting room was standing room only on our way out. (It helps alot that I can access her port before we even go to the office. Monday night I gave her the choice of me doing the needle or Bernstein's office and she chose me. It helps speed things along. The staff always ask if I want to help with the accessing and I tell them, "Heck ya! Put me on the payroll!")

This is Dr. Bernstein's NP, Jennifer Buitrago. She is so great and seems to have no other patients than Olivia! She always has such great compassion and talks to Olivia about what she's been doing. When we went camping Jennifer also gave Olivia her cell number incase Livi got "sick" and needed someone to talk to. We Love you Jen! (Jen's also the one who does the LP's.)

In order: Livi having received the versed. Livi having the versed take affect. Livi surrendering to the versed. Versed is a funny medication that makes you see funny things and makes you forget. We like versed!

We were concerned with how Livi would handle the 3 chemo's all at once. The L.P. and vincristine aren't anything new, but with the doxo...we weren't quite sure. Bill got home Wednesday late and found Livi jumping on our bed. "Oh, I guess it hasn't hit her yet?" he said. Apparently not. The office said if the doxo is going to affect her it would be 5 days out...great. By my calculations that's when Bill's off again! JOY! Porcelain throne, here we come! As of this morning, she started coughing a lot and blowing her nose non-stop. I can't tell if she's sick or it's just allergies so I have her on everything we can but...we'll see. After bath tonight we could tell it was starting to sink in. Her face was pale, her eyes sunken with black cirlces enveloping any brightness that had been there. Hopefully a good night's rest is all she needs. "Sweet dreams princess."

Reflections

I have been putting this post off knowing that it would stir up some raw emotions as well as ...well, it's just going to take a lot of effort on my part to really go through and review what has happened to our little family these past 5 months. So, word to the wise, this post is not going to be for those of you who would like to enjoy a little bit of light reading. But as Bill reminds me of frequently, which of my posts are for the light reader?! Not many, I'll admit, but I love the fact that I have an extensive journal for years to come. And I do love the ability to share our lives with those of you who do choose to dip in. That being said, off we go.

Looking back, I am amazed at how quickly the time has gone by, but yet how long ago it seems to have been. Olivia was only diagnosed with Leukemia (ALL) 5 months ago, but because of how great she's doing, I suppose, it feels to be ages ago. Her pain started in March, just before we cut her hair. I remember that because of the daily reminder of her complete lack of hair now. At a friend's house a few weeks ago I saw a picture of Olivia on her 4th birthday and her hair that was halfway down her back! I was amazed at how long it was. I remember going hiking at Red Rock for the first time in the beginning of April and her telling me she wanted it cut short, like Brooke her babysitter's. So we chopped it that same day. We didn't have another fun day at Red Rock until Labor Day. That was 6 months worth of time, lost. The pain, as I mentioned started in March though, right before Easter. I remember thinking, "Awww! Come on...it doesn't hurt that bad." And after a couple of days of the incessant knee pain saying to her, "Come on Livi, just don't think about it. Let's go." When doctors can't help and you're not sure of what to do yourself, what do you do? I can't believe that it came to this. I remember thinking and telling several people, "If it's Leukemia fine, let it be leukemia, I'll deal with it. But at least tell me what to deal with." I would ask the doctors at every visit, and there were several, "Are you sure it's not Leukemia? Can we be sure? 'Cause I know I'm obsessing over this but just having lost my mom to cancer...I think about it alot." Their response was always the same, "Oh, it's nothing to worry about. It would show up in the blood work if it was." This was not dumb doctors talking this was a very "freak" case. Having taken Aaron to the kids' pediatrician last week, Dr. Lepore informed me that he spoke to Livi's Oncologist about how bad he felt. Dr. Bernstein had reassured him that "it was just a freak thing, it would have been a really hard thing to find for anyone," because it wasn't showing up in her blood. Even Dr. Bernstein had told us the Friday previous to diagnosis that he was 99% positive that it wasn't Leukemia and that he needed to do the bone marrow biopsy as a type of protocol to rule it out 100% before starting her on new medication for the JRA (juvenile rheumatoid arthritis) she was being unsuccessfully treated for. Tuesday, after the biopsy on Monday, I knew. Dr. B. came into Livi's room and spoke in terms of "if" it is leukemia we can treat it. It was the first time he had ever entertained the idea in front of us. Upon leaving the room he bent over Olivia's bed and gave her a kiss on the cheek. I knew. Right then and there, I knew. It did not help to dispel the fight or flight instinct I had when he confirmed our fears later that evening, but it started me on a path of strength that I never wanted to have to go down. When Olivia was later readmitted for the pancreatitis, some nurses came to visit and told me that Livi's diagnosis day was a difficult day for them as well. They knew her diagnosis before we did and couldn't say a thing.

I remember the newness of it all. Feeling overwhelmed by the medications and the routine that had to be followed. The paperwork and the foundations of everyone "wanting to help". I painfully remember resenting the help being offered/given. For that much charity to be given means only one thing, that your family really needs it. To let my heart surrender myself to the knowledge that my little girl had cancer was an extremely difficult thing for me to do. Cancer means death. That was it. Plain and simple. It was easier to a) not think about it and simply do what needed to be done, or b) at the very most admit that she had "leukemia", which seemed different than cancer. To me the word wasn't as harsh, because it wasn't so much of what I had experienced up to this point of my life. I look at our routine now and smile. People see, or hear about what we do and they are for the most part perplexed of how we "do it all". I don't see it as that. But looking back, I can see what they gawk at. Funny how things become so much a part of your life that they don't even seem like a trial anymore. Annoying, yes, but a true trial, not so much.

I remember Olivia's first bone marrow biopsy. Finding myself stuck in the "procedure room" with Dr. B. drilling into my daughter's back and her moaning. Oh how I hated that. The horror of it all. I couldn't get away from it, because by turning my back towards the action I faced a perfectly reflected view of it in the glass cabinetry. Jump forward a mere 4 weeks and I'm helping hold Olivia while Dr. B. does her 4th bone marrow. Reminding him, so as not to have to consult the chart, which side was drilled last, and telling the aiding nurse how to hold Livi just right so the doctor could get enough pressure. This time we were in Livi's PICU room. This was the long awaited biopsy, to see if through everything else, Livi having to fight to merely stay alive, was able to keep her cancer at bay and remain in remission. The nurse helping with the procedure, Olivia's PICU nurse, was pregnant with her first baby, a girl, and due in a couple of months. She stood next to me with Olivia rolled up on her right side facing us and Dr. Bernstein on her backside. We kept telling the nurse to make sure she had a good amount of pressure on Livi's hips so Dr. B. could push in hard enough to get the sample he needed. He commenced the coring and the nurse's eyes were as big as half dollars. Nothing could have prepared her, like me, for the amount of force that was needed to push in to Olivia's back. The nurse repositioned her weight and kept her eyes averted the rest of the time, as I leaned over and watched eagerly for the right sample to be pulled. Like I said, it's amazing at how we become accustomed to things.

The thought of a spinal tap used to make me a bit woozy, now I watch every one very eagerly. Sometimes silently and other times not so silently, willing her spinal fluid to release out of the needle that has been placed ever so carefully in just the right spot. As of late, the last 3 times, it seems as if her spinal fluid has dried up. It is difficult, to say the least, to get everything positioned just right to have the fluid drip ever so reluctantly into the vile. Last time took so long that her versed (loopy medicine) started wearing off before the procedure was done. It was admittedly difficult to watch tears well up in Olivia's eyes even if it was just from the medication. They assured me that she wasn't feeling it, but it didn't help my instinct, once again, of fight or flight. It takes a lot of control on my part to not grab her off the table and run away... but to where, I do not know. So there on the table is where she remains, through every awful procedure with my body contorting itself however it needs to, around the machines and nurses, to beable to get our hearts as close to one another as possible. That's when my tear drops fall. Only a few, but they have great power and hold enormous amounts of emotion. I remind myself that if I let myself go, at that moment, I will not have the presence of mind to hear, what the spirit is telling me to do, or even feel the Savior's loving arms around me carrying me through this difficult time. I relax, kiss Livi's forehead, and enjoy the sweetness of the comforter near.

I remember at the greatest part of Olivia's weight loss, she tipped the scales at a whopping 25lbs, her skinny, frail, little limbs. She wore the same panties she'd had since she was 2! The smallest size they sell, and they were all but falling off of her. Two days ago she came to me and showed me the "rash" on her tummy. I laughed, and admittedly almost cried with joy when I responded, "that's not a rash, that's from your panties pressing into your skin!" Later, when Bill was home, she was shortless and I had her turn and walk away from us. Bill and I just smiled at eachother. The same underwear was being stretched to the max! What a beautiful thing!!!

I remember her coming home from the hospital in July thinking she had no hair. I look at pictures now of that time and smile. She had tons of hair!

I remember her determined mind clashing with her weakened body. Not being able to lift her leg even in the slightest but wanting to visit our neighbors a whole flight up. She stood at the bottom of their stairs crying and trying, unsuccessful at every attempt to raise her foot just one step. This being only 5 months ago and then even more weakened 3 months ago. Weakened to the point, in June, of not even being able to support her body enough to sit up on her own. I remember having to hold her on the toilet in the hospital, in June, letting go for an instant and her toppling over from lack of any muscle strength. Now, she races up our neighbors' stairs just to say "hi" and then quickly back down again.

I remember when we moved to Vegas in February, not knowing the people in our new home very well, and subsequently them not knowing Olivia very well. She got sick so soon after moving here people didn't know her as anything but a little girl cranky with the world. She was, to say the least, difficult to be around. She was ornery and mean. She didn't want to give Aaron the time of day and she yelled at us every chance she got. I used to tie her bedroom door closed with my exercise tubing as a way of keeping her in timeout because she would become so irate! (Aaron used to bring me the tubing!) It amazes me at how perfectly our sweet little girl could come back to us. Our neighbors still comment to me that they can't believe the amount of love and enthusiasm that Livi has for life, now that she's "healthy". They never got to meet the Little Livi that we knew and loved. Our New Zealand neighbor Karen, now says "she's full of beans!" (aka: full of life/energy).

Greatest of all I remember where and when it was that I realized that, yes, she is my daughter, but she is first a daughter of our Heavenly Father. She had been put on life support Saturday, June 7th with multiple system failure, and Sunday morning, in addition to everything else, her liver had started to fail. My world fell apart. I was driving back down to the hospital to meet up with Bill, that morning, when I learned a very important lesson that not everyone has the opportunity of learning in this life. Through tear filled eyes I asked Heavenly Father, "If I am to lose my daughter, if she doesn't make it through this horrific trial, what would have been her purpose here on earth but for such a short time?" The answer was so clear that the eulogy I would give at her funeral, if need be, came flooding through my mind. If but only for others to see her exuberance for life, her love for all things sacred, and her compassion for others, her life would not have been in vain. I knew then and there that my role as a mother to this child was forever changed. No longer was I "in charge" of her, per say, I was to make it possible that everything she needed to accomplish in this life was brought to fruition. My prayers to my Heavenly Father changed from that point on. "Please help me know how to help Olivia, your daughter, do what she needs to do while in this life." I received a peace that day that can't ever be taken away. An assurance that she is in God's hands and His will will be done. I was at peace with his plan, whatever it may be.

This reflection comes at an opportune time. Olivia has been improving daily since her discharge on July 1st. But we are now gearing up for a change in the course. On Tuesday of this week, she will be entering into her 4th phase of treatment. (The second to the last phase, with the last phase, maintenance, starting in November and going for over 1 year.) This new phase, Delayed Intensification is a one -two punch. It's like combining the first phase with the second. The first phase is when Livi got so sick that she lost 10lbs and couldn't keep anything in her body. Oh joy! (At least now she knows the throw up feeling and has had good practice of making it to the garbage bucket or toilet.) Also, she is starting treatment with excess weight. She is pushing 38lbs! And she feels healthy. That is so important. Because she feels so good her spirits are high. Sad but true, she's used to these treatments now as well, which means, hopefully, that the ornery, little girl won't be back. Or at least not as unrefined as before. We never had thought before of how grateful we would be for her TPN. Obviously we have been thankful for what it has been able to do for our daughter but going into this scary phase we are that much more thankful. She is down to only 3 nights a week instead of the 7, and has been given the go ahead to keep it going until she's out of this phase. So, even if she has the weight issues as before it won't be nearly as bad because she will have a good solid baseline of nutrition.

I am aware of our trials, and how they have made us stronger. I am glad to beable to look back at these months with a pleasant smile on my face knowing that we've fought hard...and are still winning. I look forward to these next several weeks with strong resolve to finish strong and go smoothly into Maintenance. I am so proud and in awe of Olivia and what a brave little girl she is. To say she has grown so much these past months would be such a gross understatement. She is years beyond her age. She is loving, compassionate and smart! Whenever Aaron gets hurt she runs to get her med supplies; neosporin, gauze pads and a bandaid. And she insists every time that she does it. Olivia cares for the wound with such tenderness and always talks Aaron through it, reassuring him that it will be okay. She takes such good care of her brother, always has since birth, and Aaron relishes in her love for him. Their bond is openly inspiring and I love being the visual benefactor.

I suppose I could be one to easily argue having had a bad day, but I don't see things that way. I can't think of a single day in this last year in which I haven't felt blessed in one way or another. We just celebrated what would've been my mom's 59th birthday. Bill was away with work but the kids and I purchased a simple yet beautiful bouquet of flowers, that we thought grandma would've liked, placed them on our dining table and admired them throughout the day. It was a good reminder to me of how much grace and peace is in the world. My mother taught me to love flowers. I can be bitter that she's not here, or I can rejoice that I have a way to remember her while she is "about [her] Father's business". The same applies with Olivia. We can be bitter that she/we are going through this trial, or we can give praise to our Heavenly Father for a wonderful plan of Happiness. I am thankful for blessings that we receive daily through heartfelt prayers offered by loved ones all around. I am so grateful of an ever growing testimony I have, that Christ sufferred all of our pains that we may know that we can turn to Him for everything. He can make our burdens light. Our lives are living proof of that. He has carryed our load and continues to do so. This, I will always remember.

Breakfast is Served

Things have been going great with Olivia as one could tell by looking at the latest blogs. But Aaron understandably so is feeling a little left out. Yesterday at his doctor appointment (he's had a rash on his tummy for a while)the pediatrician was giving all the attention to miss Olivia. Noticing her beautiful sparkly sandals and hot pink toenails, and on and on and on. Aaron was trying desperately to get a word in edgewise. (All morning, the appointment wasn't until 1:15, Aaron was repeating, "me doctor! me doctor!") This understandable but no doubt wrongfully directed attention, broke my heart. Aaron's bright blue eyes shifted quickly between the doctor and myself as if to ask, "what's the deal?!" He dove in to the rhetoric as best as he could, "Me b'ue...me toes b'ue(We paint Aaron's toenails a light blue color so he doesn't feel left out during Livi's pedicures.)...me daddy...me toes b'ue!!!" Poor kid. I tried to respond while the doc caught up with Olivia but it just wasn't the same. The doctor is a great guy, but understandably so he was more than excited to see his patient doing well whom he had failed time and again to properly diagnose. Aaron finally got the attention he desired but by then he either figured, "too little too late." Or he simply just didn't want it. My poor little guy, such a trooper. So, this blog is donated to Aaron. The firecracker of our family!!!

Anyone that has met Aaron and has had the privilege of seeing him around food, will know what I'm talking about when I say he takes food to a whole other level. To him it's not what helps you live, it's what you live for! (It's a darn good thing he's got his dad's metabolism from boyhood and that he gets to see his parents physically active daily.) EVERY morning when Aaron wakes up the first thing he says is, "breakfast!" We can't get it to him fast enough. A little over a month ago, Bill had gotten him out of his crib and went about getting ready for work. Aaron was quietly playing so I stayed in bed with hope of falling back to sleep. (Does it ever really happen?) Anyways, Bill left and I heard the refrigerator open followed by drawers being pulled in and out. A few seconds go by and in walks Aaron to my room carrying...breakfast! Except for, as you can tell from the picture, it is not the typical breakfast meal...at least not in our home. HOTDOGS?! Complete with the buns! Yumm?! (Luckily I had been looking through the pictures on my camera the night before and had it on my night stand.) This picture is SO Aaron and makes me laugh!

Well jump forward to present day. Aaron is now in a big boy bed and enjoys getting up on his own every morning. Today Bill and I were both getting ready for the day (I attended early morning spin class) and Aaron trounces in still stretching his little body. We ask him how his night was, to which he always replies, "Goo'." along with a sigh and a stretch. He then quickly follows it up with, "B'e'fas'?!" (breakfast) . We try putting him off as long as possible knowing he surely won't starve to death if he doesn't eat the moment upon awakening. Apparently, this morning, he did not agree. He must have thought he was going to starve because when we went out to the kitchen, this is what we found! To get the bowl he unlocked and opened the dishwasher, the spoon was in the drawer, the raisins on the very top shelf, and the oatmeal on top of the fridge! By the time we found him the bowl was already full of raisins. I must say, he's quite the resourceful little guy. I don't even know if my brother knows how to cook old fashioned oatmeal, and he's 24!! (HaHa. I love you Adam!!!)

What more can I say. Aaron is what keeps us laughing or in the very least rolling our eyes in disbelief. The other morning we came out to find him having eaten the cookies in the Tupperware. I couldn't remember just how many were left from the night before but it was much more than the one that sat alone. I asked Aaron how many he had eaten to which he confidently replied, "tee" (three)! And then with elbows bent and palms up shrugged his shoulders and did a quick sigh as if to say, "So? What's the big deal?" AAAAHHHHHHHHHH! It's a good thing he loves intense rib tickles because a lot of the times I don't know what to do besides that. He's just really cute and carefree.

Aaron, you may be a "nut", but we love you more than you'll ever know!

Why I love Vegas

Thankfully after Bill being on assignment most of last week, in Ohio to be exact, he had today off for Labor Day. YEA!!! The kids were dying to go to Red Rock so that's what we did. We packed a backpack lunch, which I'm getting very good and fast at, and went on our way. We left our place at around 9 and were on the trail by 9:30. This is why I LOVE Las Vegas. Now, I'm sure that there were great outdoor things to do in Sacramento but we never found them. And I know there were great things to do in Redding, but having grown up there Bill and I never did them, we took them for granted. But here...everything is new and we must take advantage of it all, so we try our best to appreciate it all. Hence the quick backpack lunches. On good weather days, which are more often then not once we're through the 100 plus months of the summer, the kids and I hardly ever eat lunch at home. We're always out. Driving up to Red Rock today I told Bill, "I don't see how I could ever get tired of seeing this." We all agreed, and had a fantastic 2 1/2 hour hike. The weather was perfect, 80 degrees and sunny with a soft breeze. The kids did GREAT! In fact Livi, of all people, did better than Aaron and wanted to climb bigger rocks and steeper hills. She was fantastic, and encouraged Aaron every bit of the way. Both of our "rock"stars were so proud of themselves for what they accomplished throughout the hike. We've been to Red Rock Canyon a few times before but had done the kids exploration hike. This time we went off the beaten path and simply climbed rocks. We thought the trail was fun; it pales drastically in comparison to what we did today. All four of us concur that we got a great workout. Bill says that's a lot coming from me!

Here's some more pics that were just too great not to share!