There is no better way to start a Sunday morning than meeting up with my girlfriends at Taylor’s for breakfast. Tricia, Bethany, Fernanda, and Stacy all came prepared with everything we needed to talk about as far as getting things in the works for transplant. These women, I swear could rule the world. Smart, compassionate, funny, beautiful, and savvy are just a few things that come to mind when describing them. Fernanda came armed with a lot of printouts about questions we need to have answered about the isolation period and we put together a pretty good game plan. It was a little overwhelming but I know not to worry too much because these girls have it all under control. There is no way that they will not have everything and more covered. We started lists of everything from who will do laundry to the schedule for Liam and Quinn, to who will sneak me in coffee when I need it. There is nothing these girls will miss and I could not have more peace of mind with whom I am leaving things in charge of. Fernanda has read over 60 blogs of other Neuroblastoma moms and knows everything we need to do and ask.
As we were leaving Taylor’s I was getting into Tricia’s car and she looked over at me and called Fernanda a real life Superwoman. She hit the nail on the head with that one. Fernanda is a even better than Superwoman… she is my version of a Spanish Superwoman with sass, spice, brains, compassion, and just the right amount of a fiery attitude to help me kick ass through this. Then there is Stacy. The most loyal person I have ever met who loves me like I am family. Who knows just how to calm me down by just giving me a look. If there is ever a time that I feel overwhelmed or panicked, all I have to do is look in Stacy’s eyes and I know everything is going to be alright. She is the type of person who will bend over backwards for you, without ever asking a thing in return. She gives with her entire heart, no questions asked, and fills me with the peace and calmness that I so need in my life right now. And Bethany. You look up the definition of Grace and Beauty in the dictionary, and you will find Bethany’s picture. She is somebody that I have known almost my entire life, just not well at all until now. She is guarded but wears her heart on her sleeve. I am honored that she has slowly let me into her life as it takes a lot to earn Bethany’s trust. She is the most amazing mommy, wife, friend and someone who I would trust with my life and the life of my children 110%. Last but not least, there is my Tricia Boo. My best friend for 6 years now and we have the kind of friendship that dreams are made of. It’s been a six year love story and now she has basically given up everything to help me through this. She is the Godmom to Ronan and my saving grace. There is no way I would be able to get through this without her. Sitting at breakfast this morning I felt so fortunate so be surrounded by these women. One of the biggest gifts I have received on this journey is finding out what people are really made of. The people that are in our lives, right now, at this moment, are pure gold. They are my hidden treasures whose hearts keep me filled with courage and strength. I am beyond blessed.
I think I just wrote a love letter to my sweet girlfriends above… I could seriously write a book on each and every one of them. You know how else I know I am beyond blessed?? Because I just took the time to write about those 4 girls above and I have a handful more amazing girlfriends who I could go on and on about as well. You all know who you are and I love you so much. I will never be able to thank you enough for all you are doing for me, for Ro, for our family. I will simply tell you everyday how much I love you and how thankful I am that people like you exist in the world and I treasure you all so much. Thank you for being the truest friends alive in the purest way possible.
After breakfast, Trish came over and we sat down with Woody to go over everything. We started an online calendar to get the ball rolling on what exactly needs to happen and to figure out which days/nights I will be in the hospital and which days/nights I will be at home. Seeing this on a calendar defiantly makes me feel better. Having something to look at helps to calm my nerves. I feel like we are starting to put a very good plan into place. The thing with cancer is everyday is different and you never know what to expect, but at least this gives me a little something to hold on to. I thrive in structure and with a good plan in place I feel like I will be able to fully focus on Ronan if I know who is doing what on this day and at this time.
Today, the boys’ played with their cousin Luke for most of the day. We also had Luke’s sister Lily over to play as well. She was such a little trooper, keeping up with a house full of 4 crazy boys. I took her up the street for some girly time and we got mani and pedicures. Lily is 8 and is just as sweet as her brother. I never get little girl time, so I was in heaven. She is darling and I loved spending time with her today. We both got glitter nail polish on our toes and Lily got pink on her nails with a little flower design. I would steal those kids every weekend if I could:) It is adorable to see this new relationship flourish between cousins.
After Luke and Lily went home, I could tell Liam wasn’t feeling well today. He took a big nap which he never does and woke up with a sight fever. I sat and held him for a bit but we had to call Mimi and Papa to pick him up so he could go and stay at their house for the night. We can’t take any chances around Ronan if Liam does have something. I hate that I can’t take care of my little guy who isn’t feeling well. I mean, that’s supposed to be my job… I’m his mom. We don’t have a choice though, we cannot have Ronan getting sick with anything before transplant. Off he went and Woody, Ro, Quinn and I walked down to Jay’s house to watch the Superbowl. We had a great time and Jay was the master of the BBQ making the best steaks ever. We hung out, watched football, ate, and played catch outside. Ronan got tired around half-time so I brought him home. Quinn and Ro are fast asleep now and Woody is having some boy time with Jay and Mark. He needs that so much. I am so happy that Woody’s best friend now lives right around the corner from us. It has been nothing but great for all of us.
Alright, xanex is kicking in. I must get a good night sleep tonight…. I have so much going on this week and if I am not sleeping, lord knows what I will forget to do or what I will mess up. I’ve got to try to start sleeping more at night…. otherwise my brain turns into mush and I cannot focus or remember a thing. Hope you all had a great weekend. It was one of the best weekends we have had in a very long time. Goodnight to all of you out there… sweetest dreams possible.
Look at the stars,
Look how they shine for you,
And everything you do,
Yeah, they were all yellow.
I came along,
I wrote a song for you,
And all the things you do,
And it was called “Yellow.”
So then I took my turn,
Oh what a thing to’ve done,
And it was all yellow.
Oh yeah, your skin and bones,
Turn into something beautiful,
And you know
You know I love you so,
You know I love you so.
I swam across,
I jumped across for you,
Oh what a thing to do.
Cuz you were all yellow,
I drew a line,
I drew a line for you,
Oh what a thing to do,
And it was all yellow.
Oh yeah your skin and bones,
Turn into something beautiful,
And you know,
For you I’d bleed myself dry,
For you I’d bleed myself dry.
It’s true, look how they shine for you,
Look how they shine for you,
Look how they shine for…
Look how they shine for you,
Look how they shine for you,
Look how they shine…
Look at the stars,
Look how they shine for you,
And all the things that you do.
What a busy, yet peaceful day. I started off my day joining my friend, Stacy, for a hot yoga class. An hour and 15 minute class where I was drenched in sweat and tears almost the entire time. I have not done a yoga class in years, but it has been something I have dying to get back into. It was almost too much… intensity wise. I felt broken, vulnerable, sad, yet strong and calm too. Stacy looked over at me at one point while we were standing up doing our poses and saw the tears pouring out of my eyes. She came over and held me for a minute and then asked if I needed water. She then goes, “What about Coconut Water? I have some!?” She made me laugh out loud at that one. Ah yes, Coconut Water makes everything all better. We had some after Yoga and it was the best Coconut Water that I’ve ever had in my life;) Thank you Stacy for the yoga today… I really hope to get a bunch of these classes in before we start isolation. It is a good way for me to let everything go and release all of the things I am feeling.
After yoga, I came home showered and got ready to head over to The Village for Liam and Quinn’s basketball game. I took Ronan with me. He was in heaven and spend a lot of the time helping Woody coach. He even had his own whistle hanging around his neck. It was adorable and he loved being out with his brothers. Liam and Quinn did great as always. They are such good little basketball players. Watching them play basketball is one of my favorite things to do in life. I am so thankful I was able to go today; it meant a lot to all of us.
After basketball we came home and I took a long nap. I think the hot yoga and all the crying I did this morning did me in and I had a bad headache the entire day. I felt better after I woke up and around 5 I headed out to church, a.k.a. hiking. I needed an active day today. It has been way too long since I’ve been in touch with nature and hiking is something that I have been missing so much. I ran up the mountain, watched the sunset, and prayed my ass off. It was one of the most gorgeous evenings tonight and hiking always clears my head. Today was absolutely perfect in every way.
The boys’ have their cousin, Luke, staying the night tonight. He is a fifth grader at their school and all three of my guys idolize him. Woody took them to play basketball at The Village and then to pizza tonight. If my boys’ turn out to be anything like Luke, I will feel like the most blessed mama in the world. He is a parents dream come true. Such a sweet soul, funny, and is so good with all of my boys’ but especially Ronan. We love having him here and spending time with him. I think it is really good for Liam and Quinn; it is good for them to have somebody to look up to who is a little closer to their age. Thanks Heidi for letting us borrow your Lukey. We love him like one of our own:)
Tomorrow we are having another low key day. I’m going to breakfast with a few girlfriends to go over isolation things in the morning and then we are planning on watching the Superbowl over at Uncle Jay’s house. He lives right around the corner so if Ronan gets too tired, I can just walk him home. I may try to sneak in another hike before my insanely busy week starts. My body is already beyond sore and it is a feeling that I miss so much. Before all of this exercise was my stress relief. It’s hard not to have the consistency of that in my life anymore as I don’t have any other outlets. I’ve got to make the most of these couple of weeks before transplant.
Ronan is curled up beside me. Luke has been in my room reading him some books and cuddling up with him. So cute… he loves to love on Ronan. It has been such a nice family night at home tonight. We have really been needing this time together. I’m finally getting a little sleepy so time to shut things off. Hope you all had a great Saturday; thanks for checking in with us. Sweet dreams!!
Ronan and I headed to PCH this morning for his clinic visit and audiology test. Once we got to the clinic, I could tell Ronan had been put through enough this week, so I ended up calling audiology and rescheduling the rest of his test for next week. Enough is enough. It was a good thing because Ronan ended up needing a platelet transfusion and it took forever today. We were at the clinic all day long. I am so over this week. Next week is going to be just as busy. We are at PCH everyday except Friday. If I think I’ve had enough, imagine how my 3 year old is feeling. He’s such a good little guy though. He has been going with the flow with everything; except the audiology test. We’ll deal with that next week. We are going to spend this weekend letting him be a kid and enjoying being at home.
Our weekend plans are busy but low key. I am going to hot yoga with my friend Stacy in the morning. So looking forward to that. I need to get some of this toxic energy out of my body. Liam and Quinn have 2 basketball games tomorrow and their cousin Luke is going to come over and stay the night. All 3 boys’ are so excited, they beyond idolize their older cousin. We love having him here, and he is especially great with Ronan. I would love to sneak in a hike up Camelback but we shall see. I mainly just want to enjoy being at home with all of my boys. Our time together is so precious.
I just got some exciting news tonight. My dad, whom I have a very “special” relationship with, as it is not a normal daughter/father relationship. It’s complicated, it’s sometimes strained, but always honest to a fault. My dad, after being divorced for 16 years, got remarried. I never thought I’d see the day but I couldn’t be happier for him. I always pictured him growing old alone and the thought of this always made me very sad. He has been with the same woman for about 10 years now and I adore her. They finally tied the knot:) So happy for them both and I told my dad tonight that he’d better not screw it up again and he’d better take good care of her. I hope he listens. I have a feeling he will. She knows him better than anyone and knows just what to expect. My dad rarely reads this, but if you are tonight…. Congrats again to both of you. You have no idea how happy it makes me to know that someone will be by your side to take care of you, and in turn you will have someone to take care of as well. Everything is as it should be for just his minute in time and I am very thankful.
So, are you ready for “The List?” My friend, Fernanda, sent it to me today. It is something that she found while researching isolation for us. It’s a little overwhelming, but I have such a good army of people who are willing to do anything and everything for us, that I know it will be o.k. Thank you so much to all of you who are offering your help; you have no idea what this means to me. I can do this, Ronan can do this, we can do this. It is a glitch in time and I am going to make this positive in every way I possibly can. Nothing but the best for my baby; we are going to take this the crummy situation and make it as fun as possible for him.
I am going to make this list my bitch!!!!!!!! Let’s do this!!!!!!
Home away from home
Probably one of the most difficult emotional aspects of the transplant process is all of the time you will spend away from home if you don’t live near the hospital. Your transplant social worker or other hospital coordinator will help you arrange for housing if you live far away. During the weeks of outpatient transplant recovery most hospitals will require your child to be within a 30 minute drive (with traffic) from the hospital in case of fever or other medical issues. Although it’s comforting to be close to your hospital, chances are you’ll end up staying in a facility provided by your team, such as a Ronald McDonald House, local hotel, or temporary apartment. Some families are lucky enough to have friends or family near their hospital and able to accommodate them. Check with your child’s transplant team before making any arrangements, as individual hospitals have various guidelines and preferences for where a child may stay during the transplant process. Such guidelines relate to disease-control issues and are imposed with your child’s safety in mind.
Wherever you are, it isn’t home of course. That said, there are many ways to make your surroundings feel more comfortable and familiar.
Although lots of little knick-knacks can get dusty and are usually discouraged, bring a few favorite items from your child’s room or your home.
Consider laminating posters of your child’s favorite characters or movies to put up in the transplant room. Laminate family photos (easier with a copy printed from your computer if you have digital photos). Laminated items are easy to clean and make a better choice than framed items (usually not allowed on the walls because of nail holes).
If it is not provided, consider bringing a small lamp with a soft light. This can make any room more comfortable.
Invest in a portable DVD player or CD player if the transplant room will not contain a TV. If you’re staying for a couple of months, consider bringing a small TV if it is allowed (it may not be because of noise control).
Bring your child’s favorite towels, sheets, pillows, and blankets.
Bring washable stuffed toys for your child’s bed.
Consider bringing an area rug or play mat for the floor to soften up the room. Make sure it is easily washable.
If it isn’t provided, bring a shower squeegee. You can get one of these at Target, Wal-Mart, or the like. It will help control mildew in the shower.
Since food for caregivers is usually not allowed in individual rooms (to avoid germs), bring plenty of familiar snacks and foods to keep in the communal kitchen. Check with the medical team about any food since some are prohibited during transplant.
Preparing for isolation
Although your stem cell team will help you prepare, getting your child and yourself ready for inpatient isolation can be stressful and intimidating. Guidelines and rules for isolation stay can vary greatly from hospital to hospital; however, some suggestions and general information are provided below to help you get ready.
Insist that you be allowed to inspect your child’s isolation room before he/she is closed in. Check that every surface has been properly cleaned, sanitized, and repaired. Look in the corners, closets, etc. (Some hospitals go so far as to clean these rooms with toothbrushes and re-paint the walls and re-wax the floors between each patient.) Don’t be afraid to point out any dirty or damaged areas of the room. Check that your child’s bed is comfortable, safe, and clean. You don’t want to have to break isolation to get your child a new bed or have something repaired later.
All your child’s clothing will need to be freshly washed and completely dried in a dryer (no air drying) and placed in plastic sealable bags. This is for germ control. Hefty and Glad make oversized bags that make the transport a little easier. Once you get to your child’s room, these clothes will probably need to be removed from bags before entering the room.
You will also need to be freshly showered and dressed in freshly laundered clothes when you arrive at the hospital. Some hospitals will require you to shower again before entering your child’s room. Some will allow you to shower at home but ask that you not make any stops (gas station, grocery, etc) before arriving. If you do, you may be asked to shower again. Leaving the hospital may mean another shower (even if it is to just get a Starbucks). Remember, it’s all for your child’s safety.
Your child’s toys will probably need to be new or sanitized. Toys that can be completely submersed in water by either washing them in a sink or a washing machine can usually come in the room. Some hospitals will purchase new toys for children undergoing transplant, so check with your transplant coordinator before you run out to buy all new stuff.
Remember to sanitize and wipe down anything you plan to bring into the room. If it can go in the washer, put it in the washer. If it can go in the dishwasher, put it in the dishwasher. If not, seriously consider whether you need it or not. Check with your team about electronics, as anything electronic or with batteries will probably need to be cleaned by the environmental department of your hospital or otherwise may not be allowed. (Think laptops, DVD players, portable game devices, etc.) Notebooks, books, and other paper materials will probably need to be new or cleared by your transplant team.
Your child’s meals will need to be specially prepared, and the hospital will have a special menu for your child. Make sure your child’s meal comes wrapped in plastic. Check to see whether or not you can have a meal delivered for yourself as well, since you probably won’t want to leave your child to get a bite. Also check before you order any takeout. Some foods may be prohibited altogether in your child’s room.
As noted above, try to surround yourselves with familiar things — photos, posters, pillows, blankets, towels, etc. It may mean a little extra laundry for you, but it will help your child feel more comfortable. Rugs will probably not be allowed.
Make sure you purchase new toiletry items for your child- and COMPLETELY discard the old ones — don’t save them at home for use after transplant, because your child’s immune system will not be normal for a long time. These items include toothpaste, hand soap, toothbrush, nail clippers, lotion, deodorant, etc. Anything that has touched your child’s skin, hair, mouth, nails, etc. should be replaced, unless it can be washed or totally submersed in water (like a comb).
Bring a lot of straws and disposable cutlery for yourself, and don’t share with your child from your plate!!! This is not a time to be environmentally conscious or conservative. Don’t keep leftovers or leave food out for more than an hour. Don’t save a napkin from your takeout bag that wasn’t used. Germs are a totally different thing for your family now.
Consider bringing your own Swiffer and pads. Bring lots of anti-bacterial wipes and go over the computer keyboard, phone, door handles, counter tops, bed trays, buttons, blood pressure cuff, bed frame, and thermometer handle several times a day. Although the room should still be cleaned daily by the custodial staff, you may want to go over it yourself. The room CANNOT be too clean!
As convenient as it may have been during your child’s initial rounds of chemo, DO NOT share bathroom facilities with your child. Use the parent restroom outside your child’s room when possible. If your child does not use the toilet, make sure you wipe the toilet/sink after every use.
Be extremely selective about visitors, especially children. Your hospital will have special visiting policies during transplant, but be extra vigilant yourself. NO ONE (including you) should be in your child’s room if not feeling well. Young children (even siblings) should not be in the room at all (as they are less likely to report not feeling well). The smaller number of people you allow in, the better. Your child can get sick very easily during this time.
Insist that cleaning staff, food service staff, nursing assistants and any visitors entering your child’s room wear gowns and/or masks. Anyone entering your child’s room should ALWAYS wash their hands with soap and dry with a paper towel. If ANYONE coughs, sneezes, or sniffles in your child’s room, insist that they leave immediately. Small germs can cause big problems during transplant.
Some medical issues during transplant
Drugs. Your child will probably be taking several different drugs before, during, and after his/her transplant. These drugs are primarily administered to prevent viral, bacterial, and fungal infections, which can of course be very dangerous to your child during this time. Some of them don’t taste very good, so experiment if possible with your pharmacy’s flavoring system. Choose something that generally tastes good to your child, or whatever is most likely to go in and not come right back out. Get into a routine for administering these drugs — keep a schedule, checklist, calendar, or timer set, as each one is probably going to be administered at different times. Eventually you will be able to wean your child slowly off of each of these drugs as his or her counts begin to recover.
Nausea and fatigue. Not surprisingly, nausea and fatigue will be common for your child during transplant, as his or her body will be severely immune-suppressed. Expect lots of naps, easy fatigue even in low-activity situations, and overall crankiness while your child’s counts are recovering.
Food. Make sure you are fully-informed by your child’s medical team about food restrictions. The avoidance of fresh fruits or vegetables, deli meats, some breads, buffets, fast foods (unless freshly prepared), yogurt and some other dairy products, and tap water will be among the many restrictions for your child. Food also must be prepared in accordance with certain precautions, so make certain you understand all the requirements. Know what is safe and what is not. These restrictions are for your child’s safety, and shouldn’t be taken lightly. Some teams will refer to the rule “packaged, processed, frozen” as a guideline for foods for your child. As disgusting as it sounds, most of these foods are safe and should be the basis of your child’s transplant diet. If you’ve been lucky enough to avoid an NG tube or TPN before now, you’ll probably become familiar with one during transplant. Since most children don’t eat or drink for several days or even weeks during this time, the provision of nutrition by IV infusion is likely. Both options have their pros and cons, so discuss both with your team so you can make the best decision for your child.
Skin. Shortly before your child’s isolation, he/she will receive the final round of chemo. These high- dose chemos come with some added precautions to protect your child’s skin and internal tissues that you probably have had to experience during induction chemo rounds. Again, discuss the requirements and side effects of these drugs with your team. Some of the protective precautions taken may include: use of a Foley catheter during the duration of the Cytoxan dose; 4-6 hour bathing
intervals (round the clock) during and a couple of days after a Thiotepa dose; frequent mouth care with lidocaine or similar mouthwash to counteract mouth and GI sores that accompany several drugs (ACT or lidocaine-free mouthwash helps for a young child that cannot spit yet, and offering frequent popsicles before onset of mouth sores help to reduce the incidence and pain); protective creams (also for the skin burns that can accompany Thiotepa- ask for the Remedy line if your hospital provides, otherwise ask other parents what they used). One cancer family concocted their own recipe — equal parts Kaopectate, A&D ointment, and Aquaphor cream. Mix it all together in a big bowl, put it in a squeeze bottle (like a shampoo bottle), and rub on diaper area and any skin fold areas where irritation occurs. Keep away from the eyes, of course! Even if your child is out of diapers, his/her diaper area will be very irritated for some time. There are several creams that parents have found to work well during transplant. Dr. Smith’s Diaper Cream, Flander’s Diaper Ointment, or the homemade version mentioned are all standard choices. Be prepared to try lots of things until you find what works for your child.
Pain. Your child will most likely be on morphine or other pain control (either PC or continuous) at some point during the isolation period. This may seem extreme to us, but it really does help control the continuous irritation from mouth and GI sores, as well as the sometimes severe skin irritations. If your child is old enough, he or she may be able to control the dose, and the pump may be put on a continuous flow for some children. The doctors will slowly wean your child from the pump, and most children must clear the pump before leaving the hospital.
Keeping your family together during transplant
It’s hard to keep your family together during this difficult time, especially if you are traveling to a distant cancer center, if there are other children in the home, or if one or both parents still need to work. Having a support system is very important. Many times neighbors, relatives, and friends will take turns with your other children. As much as you would like to help them with their every day activities, it may not be the best solution at the time. Because there are so many disease-control issues with your transplant child, you want to try to minimize the number of people who come into contact with him or her during this time. As much as possible, your child’s only contact other than the medical team should be you and your spouse. Many hospitals will also not allow young visitors when your child is in isolation. Keep this in mind, and be sure to talk with your team before bringing siblings to visit in the hospital.
While your child is staying at a facility, hotel, or friend’s house near the hospital (either before or after isolation) consider bringing siblings to these places to visit and/or stay the night. Most of the time accommodations can be made, although not usually every day, when siblings want to visit.
Also think about trying a web-cam service to keep your child in touch with siblings, other family members, or friends. Someone at the hospital may be able to help you hook up this service, either on your own laptop or on one loaned by the hospital. This way your child can chat live with his or her family and friends. It works out great for Grandma, too!
Older siblings might enjoy keeping a journal or tape-recording themselves for your child to read or hear. If your child is old enough, he/she may want to journal back or tape-record a message back. Hearing familiar voices is also good for little ones, as they are very responsive to familiar voices.
Keeping yourself busy in the hospital
There are many things that you can do to keep your sanity while you’re inpatient with your child. Although not always the case, some children sleep A LOT during transplant and may even be unconscious for periods of time. Although this may be scary for you and your child, it is generally normal and will pass. In the meantime, you’ll have to find something to keep your mind busy. Since you probably won’t want to come and go from the room very often (minimizing contact with germs), you should bring along lots of stuff to keep you occupied. Some suggestions are:
Magazines, books, crossword puzzles
Laptop computer with internet access (sometimes hospitals will loan one to you)
Sketch pad or journal
Crochet, knitting, or scrapbooking
Hand held game system (may sometimes be loaned by the hospital)
Healthy munchie snacks (nuts, popcorn, etc.)
A new address book to fill out
Remember that your child’s toys can also be therapeutic for you- coloring and crafting have actually been shown to reduce blood pressure and quiet the mind!
Keeping your child busy in the hospital
You will need to bring some things from home to keep your child busy and happy while in the hospital. Many hospitals that offer transplant procedures do a great job of making your child’s room comfortable and homey, and provide toys and other items to help entertain the child. Ask to speak with a child life specialist or social worker BEFORE isolation to see what can be done to help your child’s stay more enjoyable. Remember that he or she will be very tired and may not feel well enough to play or do any activities. This doesn’t mean you shouldn’t try! Each day, encourage your child to get out of bed if possible, read, interact with you, watch favorite videos, bathe and change clothes, eat or drink, and walk. There will be some days that your child will not be able to do any of these things, but daily encouragement and motivation will help your child recover. Here are some suggestions:
Bring new board games or puzzles.
Buy or rent new movies or movies your child has been wanting to see.
Encourage play that gets your child moving and out of bed — bubbles, window markers, floor activities, tents, ball pits, video games like Wii, anything that might encourage your child to move! Most hospitals are supportive about bringing whatever you think might help your child. Just make sure it is either new or properly sanitized first.
Many hospitals will stock your child’s room with age appropriate activities, new toys or games, and other favorites based on information you provide about your child. New things are always a nice distraction!
Talk about the view with your child and encourage him or her to get up and look out the window. Even if you can only see a wall, sunlight and a busy alley can even be exciting.
Keep a calendar of your child’s activities and status each day. Display a large classroom calendar (you can get one at a teacher supply store, make one yourself from a poster board, or even ask the hospital for one) and keep track of your child’s days inpatient. Encourage him/her to decorate it too.
Remember to be happy and upbeat as much as possible around your child. Even on the toughest days, being positive can help your child feel better.
Preparing your home for your child’s return
Preparing your home for transplant is a big job. Once again, check with your child’s team as every hospital’s guidelines are different, but here are some suggestions:
At the very least, have all carpets in your home shampooed, steam-cleaned and sanitized. If you are financially able and your carpets are more than a few years old, you may want to consider replacing them. If you do this, don’t forget to vacuum the floorboards before new carpet is laid. Usually the carpet-layers won’t do that.
Have your duct-work professionally cleaned if possible and change the filter in your furnace. Buy enough filters to change them every month for the next year, and if you’re financially able, buy the really good ones.
Have your home cleaned top to bottom. Whether this is done professionally or by you, family, and friends, be very picky about how your home is cleaned.
Wash all draperies, throw rugs, throw blankets, pillows, sheets, and towels
Wash any stuffed animals
Vacuum or dust behind and under all furniture, including appliances. 4. Clean out your refrigerator and freezer.
If you have a door-front water dispenser, change the filter.
Discard or give away any house plants. Ask your team if you’re really attached. Some plants can just be moved to other rooms of the house.
Put away or discard your portable humidifiers. You probably won’t be able to use them in your home for at least 6 months.
Wash out all cabinets (inside and outside) in the kitchen and bathrooms. Clean all blinds
Scour all bathrooms.
Clean all light fixtures and fans.
Vacuum or dust all ceiling corners and vent covers.
Wash all windows and windowsills
Scrub floors and grout.
Clean your child’s toys with an alcohol/water solution. Add essential oil or lemon juice for a better smell!
Dust, sweep, mop, clean, vacuum and scrub everything in sight! Again, your home CANNOT be too clean
Have your chimney swept.
Don’t forget to insist that everyone who enters your home be healthy. Anyone with a sore throat, cough, sneeze, or sniffle should not be near your child until it is okayed by your stem cell team. This includes grandma, siblings, and even you!
Ask your transplant team about pets. Even the cleanest of pets carry germs, shed hair, and create bacteria in your home. Your team will be able to help you make the decision that is right for your family regarding your pets. At the very least, your pets should be regularly bathed and up to date on all immunizations.
If you haven’t yet established this rule, insist that anyone who enters your home remove their shoes at the door or in the garage. They should also immediately wash their hands with anti- bacterial soap. This includes service professionals, nurses, family members, friends. This should become the new normal for your home. Shoes and hands carry way too many germs.
Do not put hand towels in your bathrooms for about six months. Although it may seem wasteful to use paper towels, this is again an easy way to stop the spread of germs in your home for your child. Bath towels should be washed after every use for at least a few months. Same with bath mats and washcloths.
For at least six months, wash everything your child wears, even if it doesn’t “appear” dirty. Don’t “re-hang” anything your child has worn. Wash or clean favorite toys as often as possible.
Replace your child’s toothbrush every week or two for about six months.
Buy anti-viral tissues (Kleenex makes them)
Wipe down all kitchen and bathroom surfaces daily with anti-bacterial wipes for about three months.
Never leave a snack or cup (especially milk) sitting out for more than an hour. Again, what is normal bacteria for us can harm your child after transplant. Also, don’t save an uneaten portion from your child’s plate or cup. Be wasteful!
Finally, as cruel as it may sound, be careful about how you and others touch, kiss and hug your child for a while. Kisses on the mouth should be limited, and make sure that anyone who touches your child is healthy and has washed their hands. If your child touches someone or something that you’re not sure about, break out the anti-bacterial wipes. Again, it is difficult to think about limiting something as essential as human contact, but unnecessary contact with germs will definitely affect your child’s recovery.
Take a deep breath! This is a lot to digest! Yes, transplant is a challenging process, but it is also an important step in your child’s full recovery and remission. Although you may be feeling overwhelmed by the idea of your child’s transplant in the future, know that you can do it! Become fully informed about the necessary safety precautions, make a plan, and stick to it! Also, don’t try to go it alone – now is the time to rely on your Neuroblastoma community and your family and friends to support you during a trying time.
Did you get all that? I am still trying to digest it all. I will be having a little pow wow session on Sunday with a few girlfriends to hash all of this out. I was born a fighter, I can handle this, it was what I was meant to do in life. I will take on the entire world to get Ronan better. Cancer has no idea who they are messing with. Nothing can come between Ro baby and his Mama Bear. We are an unstoppable team.
Cheers to you all tonight. May your weekend be filled with love, light, and laughter. I hope everyday is filled with adventure and smiles. LOVE TO YOU ALL!!!!!!!!!
A big FUCK YOU, CANCER!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
It is also my oldest and dearest friend, Sandy’s birthday. Happy Birthday my sweet, hobag, of a friend. LMAO!!!!!!!
The faces all around me they don’t smile they just crack
Waiting for our ship to come but our ships not coming back
We do our time like pennies in a jar
What are we saving for [x2]
There’s a smell of stale fear that’s reeking from our skins.
The drinking never stops because the drinks absolve our sins
We sit and grow our roots into the floor
But what are we waiting for? [x2]
So give me something to believe
Cause I am living just to breathe
And I need something more
To keep on breathing for
So give me something to believe
Something’s always coming you can hear it in the ground
It swells into the air
With the rising
And never comes but shakes the boards and rattles all the doors
What are we waiting for [x2]
I am hiding from some beast
But the beast was always here
Watching without eyes
Because the beast is just my fear
That I am just nothing
Now its just what I’ve become
What am I waiting for
Its already done
We started off this morning with Ronan’s Audiology test. It went alright… but we were not able to complete the test due to Ronan’s lack of cooperation. He was able to get through some of it in which the Doctor played high frequency sounds and Ronan would put a dinosaur into a bucket when he heard the sound. He did pretty well, but the Doctor is suspecting Ronan has a bit of high-pitched hearing loss. He is not confirming anything as of now. We are supposed to go back Friday to see if we can finish up the test. I refuse to believe Ronan has hearing loss… I don’t know why because it is very common side effect after going through so much chemo. Actually, I do know why. It’s because Ronan is different and is going to overcome any obstacle that comes his way. So what if he didn’t put the dinosaur in the bucket the second the high-pitched sound came on. He’s tired, mad, and sick of people testing, poking, and prodding at him. I wouldn’t corporate either.
After the Audiology test, we headed over to check in for Ronan’s scans. While waiting, I noticed a little girl who looked familiar to me in the waiting room. I have heard about her since Ronan was diagnosed, but have never met her. I’ve been on her website though so I knew the little girl was Ava. I went up to her mom, Chrisie, and asked if she was Ava’s mom and she said she was. I introduced myself and she knew who I was because I had emailed her awhile back. I thanked her for helping me out with my questions and we were able to update each other on both of our kids. I met Ava’s Grandmother and her Dad as well. They look like the nicest family in the world. What Ava is going through is beyond heartbreaking but she seems like a very strong little girl. All of Ava’s treatments are done at Sloan Kettering, even though they live here. Ava was here for scans today so please keep her in your prayers as well. Here is her website if you would like to visit it: www.caringbridge.org/visit/avaholder. Ava’s Neuroblastoma has relapsed twice, but she is still here and still fighting hard. I will scream and very loud, “FUCK YOU CANCER!!!!!!” for Ava. Makes me so angry. I just wanted to wrap my arms around her entire family while they were waiting for Ava to come out of Anesthesia. I am so happy I had the pleasure of meeting them today. What are the odds really? They are never at PCH and just happened to be on the same day I was there with Ro. It was meant to be. I feel so blessed to have finally met them and sweet little Ava. She is a little spitfire just like Ro
As we waited for Dr. Maze to come and get us for Ronan’s Anesthesia, he fell asleep in my arms. I sat and watched him sleep so peacefully. I took that time to think about what a long way he has come since first being diagnosed. I found myself in a comfortable state of mind full of peace and quiet. I sat with him in the dark and prayed for his scans to come back with the results we are hoping to see. I felt a wave of warmth in my heart wash over me because I felt, once again, that Ronan is going to be o.k. He is going to beat this and go on to live a normal, happy, long life.
Dr. Maze arrived and we were taken back to the room where they were getting ready to do the bone marrow procedure. He let me hold Ronan as he always does while he gave him the Propofol to go to sleep. I held him and watched him get sleepy and listened to him cry out, “Mama, mama, mama,” for me. He doesn’t like the way the sleepy medicine makes him feel. I told him I loved him and would see him soon and set him down on the bed. I gathered up my things, took one look back at my baby, and Dr. Maze yelled at me to go and eat something. I had to laugh to myself because at the beginning of all of this, Dr. Maze was so proper and reassuring. Now he knows me so well and knows that I am so used to all of this that he is comfortable barking orders at me to eat something. Gave me just the chuckle I needed to get out of there without even tearing up like I normally do. Woody met me at the cafeteria and I managed to eat a little salad, but pretty much just sucked down a giant Coke instead. An appetite is something that I am still having a hard time with, especially on scan days.
After Woody left, I sat in the waiting room and waited for Dr. Maze to come and get me. I tore through the piles of bills that I needed to get paid and the next thing I knew, it was time to get Ro. He woke up groggy and grumpy like he always does. Dr. Maze went back and looked at the scans for me and came back telling me as much as he could. Our Doctor, Dr. Eshun, is in New York City and will not be back to read the results for us until next week. Dr. Wood, who has followed Ronan since the beginning is here and I sent Dr. Maze a text asking him to please have Dr. Wood call us to go over the scans because next week is way too long to wait. I got a phone call from “A” tonight instead. It was hard for me to talk to her, as I had Ronan screaming in the background and had to run outside to even hear her talk. She said she could go over the results from the bone marrow and bone scan for me in a very limited way. As she put it, in her medical terms…. she told me that there was “No focal discreet abnormalities in the bones anymore.” Um… what?? She may as well have been speaking another language. I couldn’t think of what questions to ask, as I was distracted by Ronan and my nerves were a wreck. I said to her, “I have no idea what that means, but is that a good thing?” She said indeed it was a very good thing and that is just what they would want to see. She told me Dr. Wood would call us tomorrow or Friday to go over what exactly this means and to discuss things further in detail after they do the MRI, CT, Pet Scan tomorrow. Those scans will tell us in more detail what is going on now. All I know is “A” was not alarmed about anything and that alone will help me to sleep a little bit better tonight. I will let you all know the “formal” results when we get them, but as of now, there is nothing to be alarmed about. The treatment we are doing is working and that in itself is a huge victory in its own right.
We are all exhausted tonight and Ronan has another big day of scans tomorrow so I am going to try to get some sleep. Please continue to send your strength and love his way. His diagnoses has been beyond devastating to us, but the way he continues to beat all of the odds is beyond inspiring. He fills me with such hope and love every second of the day and it is the love that I have for him that will get all of us through this.
G’nite and sweetest dreams to all of you.
Home. After over a month of being in and out of hospitals, between Sloan and PCH… we are home again. So sweet. Yesterday, Ronan’s ANC was only at 80… today it jumped up to 240! That is very high for just one day. Ronan’s little body is fighting so hard to come back after being beaten down so badly. After Arica, our amazing friend/nurse, told us the great news about Ronan’s ANC.. she still wasn’t sure if we could go home or not. She said she didn’t want to get our hopes up because we were scheduled for scans as an inpatient for tomorrow, so that may mean they may just make us stay the night again. My sweet friend, Fernanda, came to sit with Ronan so I could run home and shower. She texted me about a half an hour after I left to tell me the doctor came in and told her that after Ronan received a transfusion of platelets, we could be on our merry way. I was so thrilled to hear this news as I was not expecting it:)
When I returned to PCH, Ronan was sleeping and when I walked into his room I had to laugh at the snow cone tent/stand that Fernanda bought for Ronan, along with his very own snow cone maker so they could sell snow cones to the nurses. Can you even stand the cuteness of this right now?? I can’t. It was the most adorable thing ever. What an amazing heart and imagination she has. Arica was telling me that when they were making snow cones, all of the nurses were like, “What is that all that noise?” Arica said she was laughing and told them, “Oh, don’t worry.. it’s just Ro making snow cones with his snow cone machine.” Only Ronan with the help of Fernanda would pull something off like that while stuck in the hospital. The thought of the two of them doing this together makes me so happy. Thanks, Fernanda, for everything. For all your help with Ronan these past couple of weeks and hauling all of our things to my car for me today. I don’t know how I would have managed without you, my dear:)
As we were getting ready to leave PCH, we were waiting for one of our doctors, “A” to come and talk to us about the weeks upcoming events. She arrived from the clinic all flustered, panicked and excited. She was jumping up and down about Ronan’s ANC and said how amazing he was that it spiked so high in one night. Talk about being passionate about her job. I love seeing that in someone who is caring for my child. A lack of passion in life is fatal. I have always felt this way and seeing “A” as often as we do, she is one of the most passionate people I have ever come across. Makes me love her even more. She told us that one of the scans Ronan was supposed to have this week, the MIBG scan had to be delayed due to the iodine not being able to get here from Canada due to the big storm. I told her not a big deal at all, as I know the situation is not in her hands. She was also trying to figure out a way to squeeze in one of Ronan’s bone scans tomorrow with all of his other scans, so we could limit the amount of times that he has to be put under anesthesia in the next two weeks. The only problem was Dr. Maze had a certain time blocked out for Ronan’s anesthesia, and throwing another scan in cut into something else he had scheduled. His office didn’t think he would be able to do it so they were going to have to get somebody else. Just as she was telling me this, she looked down at her phone and started jumping up and down saying, “Yes, yes, yes! Thank you!!!” She then told me, “Nevermind, Aubrey moved whatever he had and will be there to do all of the scans.” She was smiling and saying how she was going to have to bake him cookies now for this one. What a good friend and a good man he is to us. He knows how important it is to us to have him do Ronan’s anesthesia. Thank you, Aubrey…I have decided that you are first a good man, and than a good doctor😉
Ronan had his EKG and Echo Heart scan done today just to make sure everything is working properly. He was of course a great little trooper about having yet another thing done to him. I did have to bribe him into leaving his room to go for these scans by letting him take the 5 pounds of candy that Macy sent him from New York. Thanks Mace! Nothing like a little candy straight from Dylan’s Candy Shop to get the morning started! You spoil my child rotten and he loves you all the more for it! I love you for making me laugh the entire day with your ridiculously funny 4 minute long voicemail. You have no idea how much I needed that one today:)
Home today has been heaven on earth. To have all of my boys’ under the same roof is a dream come true. I did spend most of the night unpacking our 20 bags and doing laundry. I couldn’t stand the thought of having to wake up to them in the morning and then having to come home from a long day at the hospital tomorrow to them staring me in the face. The boys helped as much as they could and Woody cooked dinner. It was a nice, normal, happy night. It feels really good to all be together again.
Ronan knows the drill for tomorrow. I have been preparing him for it all day as far as having to get up early to go back to the hospital so Dr. Maze can give him his sleepy medicine. I find if I prepare him for things, he is less likely to throw a fit. He told me tonight it’s o.k. to go back to the hospital, as long as he doesn’t have to be “hooked up” as he calls it, to his pole. I told him he would not have to be hooked up, he was just going to get his sleepy medicine for pictures and we would go home after. He is being very cooperative with all that is being thrown his way. I am so lucky to have such an amazing little boy. He never ceases to amaze me.
Tomorrow is a big day for Ro. Please keep him in your thoughts and prayers. He will have his audiology test first thing, his bone marrow scan, and then his bone scan. We know from the scans in New York, that the Neuroblastoma was not detected in his bone marrow, but we will have them rechecked at PCH and have the bone test done as well. When Ronan was first diagnosed, he had Neuroblastoma in everyone of his bones and 5-10% in his bone marrow. We know that it is now gone from his marrow, but his actual bones may be a different story. We will hope and pray that it has drastically decreased. It cannot be any other way.
Tonight, I am happy to sleep in my own bed with my little bug curled up beside me. I was able to tuck in Liam and Quinn which means the world to me now. Who would have ever thought something so little would mean so much in the grand scheme of things. Tucking in my little boys’ is the happiest place on earth for me. I am very thankful for the nights that I am able to do this and will cherish them for the rest of my life.
G’nite to all of you beautiful souls out there. Thank you for all the love, thoughts, and peace you are sending our way. Nobody said this was going to be easy, but it is going to be worth it. The love that surrounds our family is something we are so thankful for. Sweetest dreams to you all.
I never understood before
I never knew what love was for
My heart was broke, my head was sore
What a feeling
Tied up in ancient history
I didnt believe in destiny
I look up you’re standing next to me
What a feeling
What a feeling in my soul
Love burns brighter than sunshine
Brighter than sunshine
Let the rain fall, i don’t care
I’m yours and suddenly you’re mine
Suddenly you’re mine
And it’s brighter than sunshine
I never saw it happening
I’d given up and given in
I just couldn’t take the hurt again
What a feeling
I didn’t have the strength to fight
Suddenly you seemed so right
Me and you
What a feeling
What a feeling in my soul
Love burns brighter than sunshine
It’s brighter than sunshine
Let the rain fall, I don’t care
I’m yours and suddenly you’re mine
Suddenly you’re mine
It’s brighter than the sun
It’s brighter than the sun
It’s brighter than the sun, sun, shine.
Love will remain a mystery
But give me your hand and you will see
Your heart is keeping time with me
What a feeling in my soul
Love burns brighter than sunshine
It’s brighter than sunshine
Let the rain fall, I don’t care
I’m yours and suddenly you’re mine
Suddenly you’re mine
Clarity. It’s what I’ve found tonight. It came in many different forms. A long talk with Mr. Sparkly eyes, an email from my Mrs. Darling(P.S., SB… that’s your new name) , an honest talk with my husband, and the music that blares on my headphones from a mixed C.D. that my New York Miss Macy made me. Clarity tonight is mine and I’m not letting it go. It’s as if my eyes have been blurred with a film of fog for months now, and the fog has finally been lifted. I have fought so many things, trying so hard to push away all the good and beautiful things I have in my life because I feel as if I don’t deserve them. Because I feel if Ronan is in so much pain, that I deserve to feel nothing but pain as well. I know that the pain that I feel most of the time is not going anywhere anytime soon… but I do deserve to have beautiful moments in my life such as tonight. I deserve these things because I am a good, true person who says what she feels and feels what she says. I am ready to feel again, something besides sadness and numbness. I am ready to feel these things because although sometimes I get caught up in the scariness and ugliness of our situation; I know what the outcome is going to be. Ronan is going to be fine. He is going to make it thought this and I have to remember to hold on to my grace and dignity. ( Thank you, CC for saving my life the other night;) Grace and dignity because after all of this is said and done; I don’t want to have any regrets. I want to look back at this journey and know that I would not have changed a thing about the way I handled all of this. Is my honesty a fault? I don’t think so, although others may say differently. This is me, this is my life, and you all get to watch the way it plays out in the way I handle things. I am not afraid to put all of this out there as I have nothing to hide. My truth is empowering to me and everyday I am learning something new about myself and the world around me.
My husband, has fought for months to get me back because he has watched the way I’ve pushed everything and everyone away. He hasn’t ever given up on me and tonight I was finally able to tell him everything I have been feeling and thinking. He knew all of it already and told me the story of how he never wanted to get married. He never thought he would marry because he didn’t think anyone was special enough to share his life with. That was until he met me. I was the one who changed his mind, I was and am the only one for him. He asked me tonight if I was sure if I still wanted to be with him. I told him I had never been more sure of anything in my life. I have been numb for months now, but ever since New York I have slowly been making my way back to Woody. I love that man with every bone in my body and I know I was meant to drift away from him so I could come back stronger than ever. So we could come back stronger together. I know this because I knew on our first date when I was just 21 years old, that I was going to marry Woody. I may have drifted, but I didn’t go far, and a lot has to do with the fact that he refused to give up on me. Not only has Woody been fighting for the life of our child, but he has been fighting for me as well. Until you go though something as devastating and hard as this, you have no idea how easy it is to just give up on everything. I can’t do this anymore. I can’t do this without my husband and I can’t do this by myself. I need him more than ever. He needs me just as much and I have to go back to being a wife to him. Yes, Ronan is my number one focus…. but the neglect that my husband has felt is not o.k. He deserves so much better. Being with Woody feels so good to me, but it also hurts so much. Looking into his eyes is like looking into a reflection of my own eyes which are filled with so much pain and sadness. But at least I have him to share this with and someone who knows what I am feeling and understands. He is the only one in my life who truly gets it and I cannot push him away any longer. It just makes everything so much more difficult. He is my best friend, he is the one who is going to fight this battle with me. We can do this together; we have no choice because I am tired of trying to be the strong one and do this on my own. Woody wants me to let him in again; and I am ready to let him in. I want my husband back; I have missed him so much.
I don’t often speak of the things that go on with Woody and I but tonight I am getting personal. Everybody should know what a toll this takes on a marriage. I am just thankful that our foundation and marriage was so strong before all of this which in turn will help us get though this. We are going to look back a year from now and know that we just survived Hell, and that we did it together. How many people can say that?? Not many. We have 3 gorgeous sons that need their parents and two parents who are crazy about each other. Yes, Woody… I will grow old with you and it will be the happiest day of my life. Thank you for fighting for me and for us. I am here and cancer can Fuck off because it is not going to destroy my marriage. We are way too strong for that.
I have met some of the most amazing people through out all of this. Tonight, I owe everything to Mr. Sparkly Eyes.. for never judging, always being honest, and for loving me and my family. Also, to Mrs. Darling, I too have the most insane intuition which is one of the reasons I feel such a strong connection to you…. having you tell me tonight about what you are feeling meant the world to me, because I feel the exact same way. I do not think you are a kook in any way. You are such a blessing to me. New York Miss Macy… for being my ears tonight and making me great music to help escape the dark hospital nights. Great music makes everything all better. And to my Wooddawg. For being the most amazing husband alive and for knowing that I am worth fighting for and for bringing me back to you. I’ve missed you so much.
Ronan’s ANC was at 80 today…. his little bone marrow is trying so hard to come back. We will find out tomorrow if they have come up even more. Hoping, but it does not look like we will be getting out of here anytime soon. Thank you to Sarah and Stacy for helping me today so I could get out of the hospital for most of the day and actually pick my twins up from school. They were so happy to see me:) You girls have no idea how much your help means to me. Thank you so much. Love you both.
Woody often tells me songs remind him of me. This says everything perfectly tonight. I love you, Wooddawg. I will love you forever too.
Coldplay : Green eyes
Honey you are a rock
Upon which I stand
And I come here to talk
I hope you understand
That green eyes, yeah the spotlight, shines upon you
And how could, anybody, deny you
I came here with a load
And it feels so much lighter, now I’ve met you
And honey you should know, that I could never go on without you
Honey you are the sea
Upon which I float
And I came here to talk
I think you should know
That green eyes, you’re the one that I wanted to find
And anyone who, tried to deny you must be out of their mind
Cause I came here with a load
And it feels so much lighter, since I met you
Honey you should know, that I could never go on without you
Honey you are a rock
Upon which I stand
G’nite beautiful souls out there. Sweetest dreams. I hope you all have someone in your life that makes you feel just as special as Woody does me. Love and health are the two most important things in life. <3<3 If you have them both, you are the luckiest people alive.
A week. It’s been a week of sharing a room. Hospital beds. Hospital clothes. Hospital T.V. Hospital seconds/minutes/days/nights. Hospital tears. Hospital depression. Being home last night for the entire night with my twins felt so good that it hurt. I took them to breakfast this morning and we looked just like the perfect little family. Just another mom with her sons’ on a gorgeous Sunday morning, happy, smiling, laughing. Nobody in the restaurant knew the reality of my life. They didn’t know that soon my horse-drawn carriage was about to turn into a pumpkin. They didn’t know about the 3-year-old that I have with cancer who was waiting in his hospital bed for his mom to return. That’s my reality everyday and nobody knows the pain and sadness that comes with it. It hits me hard during times like this… when I get a second of my sweet life back and then have it ripped away from me once again. I fucking hate hospitals. I fucking hate RSV season. I fucking hate cancer and all the time it is stealing away from my family life. How lovely that I was able to go home last night and spend 30 minutes with my husband and try to act normal the way a husband and a wife do, but then that turns into him saying to me while looking at an old picture of our 3 boys… “I just keep thinking, did he have cancer then? Fuck. How long has he had this?” That in turn makes me cry and I get to sit and stare into my husbands eyes as he watches me cry because some days are harder than others. Today is one of those days. Do you know why my little 7-year-old who was exhausted from the days events stayed up until midnight with me last night insisting we finish watching “Talladega Nights?” He told me he didn’t want to go to sleep because he didn’t want the time with me to end. I couldn’t agree more and he is so right in the way he is feeling. Just pile that on top of the things that are ripping my heart out at the moment and smashing it on the floor.
Today, I couldn’t pull my shit together and had to have my friend, Gay, come and sit with Ronan so I could get out of the hospital for an hour and cry my freaking eyes out. The tears wouldn’t stop pouring and I thought getting out of the hospital would help; but it didn’t. It’s was one of those day. Bloody, bloody, Sunday. Sarah the Saint stayed with Liam and Quinn all day today so I could come back to the hospital and Woody could go to the office and work for the entire day. Ronan has been a handful with a lot of energy, but is still not wanting to leave his room. He keeps talking about going home and wants to know why he can’t because he says he is all better. I try my hardest to explain things to him as simply as possible but he doesn’t get it. None of this makes sense to him and it shouldn’t.
We still have our baby roommate, with no parents in sight. The nurses have been working non-stop tending to him. The second they try to put him in his crib, he starts to cry and will not stop. Poor thing. All he wants is to be held. Makes me sick to my stomach. Reminds me to be thankful. Thankful. Thankful. Thankful. Things could be so much worse. Ronan’s counts were still around 50 today. The same as yesterday. They have got to be higher tomorrow… I don’t expect a major jump, but in the low 100’s would be nice. We just want to go home. We have isolation coming up soon and this is cutting into our time with Liam, Quinn, and Woody.
I’m being rotten tonight and I know it. Time for a positive attitude adjustment. I feel better after my day of tears. Guess I just needed to clear my head and let some things out. I’m going to snuggle up with Ro now and do my favorite nighttime activity which is to watch him sleep and wonder what that sweet little soul is dreaming about. I hope only beautiful things. G’nite dear angels out there. Thank you Sarah and Gay for your help today. I don’t know what I would do without you two. Love you.
The morning started off early and Stacy offered to bring me coffee; which I really needed. She then ever so sweetly offered to stay with Ro so I could run home and shower. So thankful for her because just being able to go home and shower makes such a difference in my day. Ronan was so great with her and he is now getting used to my friends who are coming in and out to help me. His ANC counts have come up to 56…. slowly they are jumping up. Hoping for better counts tomorrow. He has been a little grumpy today but I finally got him out of his room and into the playroom for about a half an hour. That seemed to help his spirits even though he was insisting that he wanted to go back to his room. I told him that we were getting out of that stinky room for awhile and going to do something fun. We ended up painting and picking out some Mickey Mouse movies to bring back to his room. We have been playing on one of my friends’ iPad as it has a ton of games on it that we’ve never played before. She dropped it off at my house this a.m. and it has been keeping us busy for a couple of hours now. Thanks, darling:) Ronan and I also disinfected his entire side of his room tonight. My skin was crawling thinking about the germs everywhere… we tided up his entire room and wiped down everything from his Star Wars guys to the freaking floor. GROSS. Do not get me started on the cleanliness of hospitals. It freaks me out. I have taken it upon myself to wipe everything down, everyday. Makes me feel better in a way. Weird and silly but it’s a feeling of control that I need right now.
Liam and Quinn’s 1st grade teacher called me yesterday and offered to sit with Ronan tonight so I could run home and see Woody, Liam and Quinn. BEST TEACHER EVER:) Thank you, Cindy<3 She is on her way now and I cannot wait to get home to my big boys for a couple of hours. I may stay the night at home tonight and let Woody stay at the hospital. It would be so nice to spend a little time with Liam and Quinny Q.
Home sweet home now. Got to see Woody and catch up on some things. It was beyond nice to spend an hour with him before he went to PCH to spend the night with Ronan. It feels so good to be home and so good to be with Liam and Quinn. I miss them so much. We spent the night playing “Little Big Planet,” and they both helped me with chores around the house. They are the sweetest boys’ in the world. I can’t believe how tall they have gotten! I swear they have grown a few inches since I’ve seen them last! Quinn has sprouted up and is a couple inches taller than Liam now. Woody said tonight he bets Quinn is going to be 6’8 or 6’9. My 7 year olds are going to be taller than me soon. So scary! The boys’ had 2 basketball games today and sign ups for baseball. We are trying to keep them as active as possible and everything as normal as possible for them still. From what Woody said, they both did amazing at their games today. They were both very excited to tell me about them. I loved hearing the excitement in their voices; my little superstars. Team Thompson rules;) I am so proud of them.
Time to try to get some shut eye now, I’ve got to be back to PCH early so Woody can go into the office for a few hours and get caught up on some work. Hope you all are having a beautiful weekend. Sweet dreams<3
Am I staring in Bill Murry’s movie, “Groundhog Day?” That’s what the days feel like around here. I texted Woody today and said is it Thursday or Friday today? I had no clue what day it was. I ran home to shower and repack my bag, hit up the grocery store for Ro, then headed back to PCH. Today I’m depressed, tired, and sad. Hospital living at it’s finest. I just spent the past 30 minutes staring out the window at all of the cars on the freeway, wishing I was the one with somewhere to go, with not a care in the world. I had a mini breakdown this afternoon, tears and all. Thanks to my sweet Mrs. Sangria😉 for being on the other end of the phone for me and listening to me as I was a blubbering mess. I’m better now. But that as we know, can all change in an instant.
Ronan’s ANC is still not coming up. He looks great, but they are not letting us out of here until his counts start to rise. I’ve asked everybody. I told my friend Bethany tonight that I was about to throw Ro in a duffel bag and smuggle him out of here. She offered to be my get away driver;) That’s a true friend right there. So we just sit and wait. I asked why couldn’t we just go home and keep Ronan on lockdown there. I know the reason why, it’s obvious hospital policy and rules…. but wouldn’t he be safer at home without all the hospital germs floating around?? Makes sense to me, but I know these rules can’t be broken. So, I will sit and wait while listening as my 5 month old roommate, who has cancer, gets the spit suctioned out of his mouth because he can’t swallow on his own. I will sit and wait as this little baby has to be at the hospital all alone for days because his mom is at work. I will sit and listen to him cry and struggle to breathe and watch as the nurses try to take the place of his mom for the time being. I will sit and listen to Ronan cry that he just wants to go home because he misses his brothers so much. I will sit and wait and be patient and comforting to my son because that is what he deserves. I will sit and be thankful too. Thankful that I can be here with Ronan, thankful that I don’t have to work and leave my son alone. I have to find the silver lining in all of this somewhere. On the inside, I feel empty, tired, and numb. I want this all to go away; now.
Today was spent keeping Ronan busy and his mind off of being in the hospital. We sat in his bed and played Star Wars and watched movies. We broke out this adorable “finger ink” book that some mystery person dropped off the other day… as well as a bag full of other goodies. Still don’t know who this was but thank you again:) We sat and pressed our fingers on the ink pads and made silly pictures. Ronan then decided to dot my nose with a the color green. Well, that led to bigger and better things and before I knew it, I had inked his entire head and face all orange and made him look like a pumpkin. He inked my face purple and green. We were laughing the entire time and thankfully, the ink was really easy to wash off. Messy but very well worth it. Being in a hospital so much you have to get crazy sometimes. That was our crazy for the day; and we had a blast.
Short and sweet tonight because that’s all I can do. Hopefully tomorrow we will see a rise in Ro’s immune system counts. PLEASE. Love you all. Sweet dreams.