The sweetness of simplicity

Hello my friends. I’ve been hiding from you too… hence my writing to just Ronan; which I will continue to do as it feels good to me. But I still want to write to you as well. I wish I could tell you things are better; but they are not. I wish I could tell you that we are learning to come to terms with all of this; but we are not. I know this is still all fresh and new and I imagine it will be years before we will learn what happiness feels like again. I know that the absence from Ronan will always remain in our hearts, in our minds, and in our souls. That will never go away. I am doing the best I can do; today. That could all change tomorrow. I can tell you that I didn’t end up in a mental institution like I had suspected I would. I can tell you that I didn’t blow my head off with a gun, like I have dreamed of. I can tell you that both of those things won’t happen because that to me feels too selfish and that right there will prove that cancer has completely won and I won’t let that happen. I won’t do that to Ronan, to Liam, to Quinn, or to Woody. Or to any of you. I can tell you that I am still here and one of the hugest reasons is to keep Ronan’s memory alive. I have a big job ahead of me and although I am not ready to fully embrace it yet; the time will come when I can and I will. I would like to hide out for a little while longer. I am taking a break from the everyday things and embracing the love from my husband and twins. It’s been hard. I feel disconnected from everything and everyone. I am having to learn to feel the love from my twins again. Not that it ever went anywhere, but when I was taking care of Ronan I was with him 24 hours a day, for 8 months and fully submerged in his world. The bond that came out of that is something that I will never feel again. Our relationship formed into something so much deeper than anything I have ever known or will ever know again. Our relationship was filled with a love so deep, so painful, so raw, so heartwrenching, that it went to a whole different level. And I know that I love my twins just as much as Ronan and I would have fought just as hard for them, but the fact of the matter is I didn’t have to. I went through this with Ronan and in 8 months I gave him every ounce of love that I had. It was intense and exhausting and I wish this would have a different outcome. I wish I didn’t have to pour everything I had into him just to have him leave here. I was prepared to give him everything I had for the rest of my life. But instead I had to give him everything I had, for the rest of his little life. And his life was cut way too short, way too fast. All of this leaves me feeling empty, lost, and extremely sad. I know I have to go on, that I have a purpose in life, but it does not feel that way at this moment. After 8 months of fighting, I am now left with nothing. The fighting is gone, Ronan is gone, and the quietness and calmness that is seeping in is not welcomed. I don’t want it, I don’t want to embrace it. I just want Ronan. I know that he is not going to come back, at least in the way he was before his death. So, I am going to have to learn to live a life again without him. I am going to have to work to rebuild our family. I know this is not going to happen overnight. Everyday for us is going to be a struggle. But I also know that my actions and the way I handle all of this is going to have a huge impact on how we get through this. So, I am going to take a little break from Phoenix. I am going to throw myself into the world of Liam and Quinn. I am going to love them with everything I have and Ronan is going to help me do this. I know he misses them almost as much as he misses me.

I’ll never forget at Ronan’s service when one of Ronan’s doctors, Dr. Wood, came up to me and hugged me. He then looked at me and said, “Please give those 2 boys the best life possible. They deserve it.” I made him a promise I would. I’m not going to let him down or my twins down. I will continue to be the best mom I can to them. I made a huge promise to Dr. Maze too. He is asking a lot and at one point I told him I could not promise the things he was asking of me. But today, I feel differently about it. I feel like I can maybe come through with what he is asking of me. After all he has done for Ronan, I am having a hard time ignoring what he wants. I am going to take these next few weeks and work really hard on some things for him. I told him that when I come back, I will try to be stronger because the way I left him, was awful. Awful in the way that I could not even drive myself home because I had to sit in my car and bawl for an hour as I did not want to go on. I somehow managed to drive myself home through all of my tears and anger. I somehow managed to let Ronan’s little voice guide me and listened to him tell me how I cannot give up so easily. I know he does not want to see me yet; he needs me to help save our family and to help raises awareness for the sickening disease that stole his life. Even though he is gone; he still needs me just as much as before. Even though he is still gone, when some stranger asks me how many children I have; I will always say 3. We will never go back to being a family of 4 again. We talk about Ronan everyday as if he is still here. That will never change.

Yesterday, I spent the day with Liam, Quinn, and Woody. Despite Ronan being gone; there was a lot of laughing from the twins. They are as happy as can be and I know a big part of that is all the time they have been having with Woody and I. Their happiness is so simple. It is because we are together, as a family, enjoying the laziness of summer. As painful as it is for me, I can tell it is a little healing as well. I’ve missed my buddies. They are such amazing little boys who have been robbed of so much. It’s time to slowly make things up to them. One day at a time. I am so thankful for them because I know without them, I would not be here. That I can guarantee. But they are here and they are the most beautiful little boys who love me so much. Who love Ronan so much.

Alright my friends whom I’ve missed so much. Time to go and enjoy my little men today. Blessings and love to you all.

xoxo

We miss you, Ronan.

There’s beauty in the breakdown

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)

Movies

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.

www.nbhope.org

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!!!!!!!!!

P.S. Today was World Cancer Day. You know what I have to say to that????????????????? Earmuffs if you must.

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]

[chorus:]
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
Rising sound
And never comes but shakes the boards and rattles all the doors
What are we waiting for [x2]

[chorus]

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

Oh

MRI, CT, and Pet scan results…. kind of

After what seemed like the longest day ever; we returned home around 7:30 tonight. Ronan insisted we stop at CPK for pizza so we met Woody for dinner. I ate my one meal of the day, Ronan didn’t eat a thing and ended up just making me hold him while I ate. As  soon as we got in the car I was almost instantly sick to my stomach. I told you I don’t do well with food anymore…. we got home and I threw up my entire dinner. Awesome. Ronan is so used to seeing me do this now he just looked at me and said, “I sorry Mama. Do you want your toothbrush?”  It was the sweetest, saddest thing ever. He then asked to be put in my bed and for me to go to sleep with him. That is precisely what I did. I curled up beside him and 5 minutes later we were both sound asleep. I feel like I’ve been hit by a bus and am physically  and mentally beat. Ronan woke up around 9:30 tonight asking for some pizza, carrots, apples, and whipped cream. Nice combo. What Ronan wants, Ronan gets. He ate all of the food that I got him and went back to sleep. We have another early day tomorrow at PCH trying to finish up his Audiology test and then going to the clinic for a possible platelet transfusion. When they drew his labs today, his platelet count was low. “A” wants them checked again tomorrow and told me he will more than likely need to get them.

After Dr. Maze came to get me when he was done with Ronan I returned to a very sleepy little boy. I sat quietly and let Ronan wake up on his own and Aubrey tracked down Dr. Wood for me so he would come down and go over the MRI,CT, and Pet scan results. The results are all preliminary results, but I’ll take them. Dr. Wood told me that the Neuroblastoma is still showing up in a few areas, which he expected. Ronan’s shoulder bones, his upper thighs, and his spine all seem to have some Neuroblastoma left in them. The activity has decreased immensely and he said for as much cancer as Ronan had in his body, in no way shape or form, did he expect it to be gone entirely. This is what the Stem Cell transplant/radiation/antibodies will do. Remember, Ronan had Neuroblastoma in every bone in his body; even his pinky fingers.  I asked Dr. Wood if he saw anything he was concerned with and he said not all, that Ronan is making great progress. I wish I could say a huge sigh of relief came over me today, but I am still left with a feeling of numbness and sadness. Ronan’s results are amazing and I am elated that his cancer is responding so well; but the bottom line is my beautiful baby boy has cancer and I just want it gone. Now. I know, I know…..this is not a sprint it is a marathon. We will get him there but for some reason today was a hard day for me. Harder than yesterday. As I said before, all of these results are preliminary and we will know much more next week after he does the MIBG scan. That is on February 10th. As of now, we are moving forward and preparing to go ahead with transplant.

I have not spoken to anyone on the phone tonight except my dear Fernanda. We talked about Ronan’s results and I listened to her as she told me how she took the time today to research what exactly needs to be done for isolation and she made out a list for me that she got from the internet of other Neuroblastoma moms. I mean really, Fernanda. Never in my life will I be able to thank you enough for all the things you are doing for me without me even having to ask. I am so thankful for you every second of the day. Fernanda’s list includes everything from scrubbing down our isolation room with a toothbrush (not even kidding), to making sure every item of clothing is bleached and sealed in a bag before it goes into the room. She told me to stop doing my laundry for the next two weeks and to leave it at my door so she can pick it up and I won’t have to waste time on that bullshit so I can fully be focused on Liam, Quinn, and Woody. I said to her, “Well what if I like doing laundry?” She then told me that the only reason I like doing laundry is because it gives me a sense of normalcy and nothing in my life is normal at the moment so to knock it off. I had to laugh as this is so true. Laundry makes me happy because it is the one thing that I freaking have control over in my life and it is something that will always be consistent and never change. It’s true; I absolutely love laundry:)

I am trying to wrap my head around giving up complete control of my life once this isolation thing starts. Just the thought of this gives me such anxiety. I think I need to make a list of the things I can control, just to make myself feel a little bit better. I have no idea what that even will consist of because my “normal” life is pretty much going to be gone. All I have to say to this right now is HOLY FUCKING SHIT. I still cannot believe any of this is real. Shouldn’t this be a movie that I am watching in the theaters or something?? This cannot be real life, this cannot be my life or Ronan’s life. I will never stop shaking my head and the tears will never stop. This is all too much. What I wouldn’t give to complain about the things I used to complain about like having to take Ronan to the grocery store because he would NEVER sit in the cart and would insist on running up and down the aisles which would drive me crazy. Or how I would feel so overwhelmed with my daily “to do” lists….. what a joke. Nothing in my old life was anything to ever complain about.  I would give anything to have my worries of the day consist of what I was going to make for dinner and how I was going to squeeze in Ronan’s nap for the day because of all of the “things” we had to do. My past life all seems make believe, like it was never really real and it was all just a dream. I could sit and cry just thinking of all the things I was ungrateful for and how much I miss what we used to have. That won’t do me any good tonight though. Tonight I am not going to sit and cry myself to sleep because today was a day full of good news. I have to remind myself that on days like today, I am not allowed to be sad. Ronan is working too hard so I will take tonight to be thankful for the progress he is making and be proud of what a strong little boy he is. He is the bravest soul that has ever existed.

Tonight, while we were waiting for my car from the valet, I caught a glimpse of myself holding Ronan in the doors to the clinic. It was another one of my out of body experiences as I looked at my refection and almost didn’t recognize who this person was with her baby boy draped over her body. It was me but I felt as though it wasn’t. It took my breath away for a second and I almost felt like I was going to faint. Had nothing to do with the fact that I had not eaten all day I’m sure;) It had everything to do with the fact that I will never get used to the fact that I am now a mom to a child with cancer. I will never accept this and I will never come to terms with it. This is just a moment in time, a sick and twisted way of Ronan having to prove how much he deserves to be on this earth. It’s my way of proving how much I love my son by fighting as hard as I can fight to keep him here and surround him with every ounce of love I have in my body.

God, am I even making sense tonight? I feel delirious and all fired up at the same time. One day at a time, one step closer to Ronan’s wellness, right Auntie Karen:):) She always tells me this…. love and miss you so much. Hope you are having fun in Cali:) Thinking of you there makes me smile because I can picture all of the laughing and fun you are having. That makes me happy and gives me peace tonight. You know what else gives me peace?? All of you. When I get pissed at the world, I think of all of you beautiful souls out there who love Ronan so much and who have faith that his journey is meant for a very special reason. Having you all believe in him and love him so much means everything to me. So thank you a million times over. You all give me strength when I need it most.

Ahhh….. my New York Miss Macy is calling me right now. Perfect timing as she gives me the giggles like no other and I can’t think of a better way to end the night. I am beyond blessed to have the most amazing friends. Love you all! Sweet dreams!!

xoxo

This picture says everything tonight. My favorite animal is a Giraffe. Ronan’s is a Zebra. Keep on holding on baby. We will get you through this.

Bone scans results…. kind of.

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.

xoxo

A Margarita, Sangria, or George Clooney??

I talked to Dr. Wood this morning and Ronan’s ANC counts came up from 0 to 25. This still doesn’t mean we will be getting out of here anytime soon as they have to be up to 200 and rising for Dr. Eshun to discharge us. Dr. Wood said he expected us to be here until next week. Our little monkey is getting restless and tired of being here. How in the world am I going to entertain him until next week? We will just have to make due. My friend, Fernanda, came and sat with Ronan for 4 hours today so I could run home, shower, do some laundry, and run some errands. I got a chance to catch up on the phone with my Susie and Bethany. Both of those phone conversations were long overdue and it was so good to hear both of their voices and catch them up on things. I miss them both so much. Thank you, Fernanda, for taking such great care of Ronan for me. He LOVED having you here and is still talking about the things you two did. I am so lucky and blessed to have the amazing friends I do. I am thankful every second of the day for all of you. <3<3

I am really, really, really, excited for a few things that some amazing people are stepping up and doing for us. Not going to go into too many details but so many people have been coming out of the woodwork and wanting to help change PCH and the way things are done around here. They know who they are and they are just as passionate and excited as I am. All they needed was Ronan and his story to fuel the fire for making the world of Pediatric Cancer, a better place. I am so excited to be involved in this process with the vision and help of great friends. Ronan is changing the world already at the small age of 3… I can't wait to see what amazing things come of this. Thank you, my dear friends who shall remain nameless due to them being the kinds of people that don't want recognition, who just want to do amazing things when nobody is watching. I can't tell you how much I love this. There are not many people in the world who just do things without the whole world needing to know about it. I am going to have to come up with a nickname for this new friend of mine…. you know who you are<3 I will think of something after I get to know you a little bit better:) Maybe Mrs. Margarita due to your email tonight;) Love you, your passion, and your heart. Thank you, sweet girl.

The rest of today was spent playing with Ronan. We had a new nurse today that we haven’t ever had before. Imagine that! I thought we knew everyone on this floor. Her name is Holly and she was a delight. Ronan adores her and she was very sweet to us. We hope to have her again and also love the fact that she too is a former Sundevil:) The ASU baseball team came to visit the kids on the floor and I coaxed Ronan out of his room to go to the playroom to see them. I am so glad he agreed to go because he was able to meet some very special people and also get a couple of baseballs signed. Thanks Margaret for being extra sweet to Ronan. It was so nice to meet you today:) He was a little overwhelmed and a little shy but was very excited about the baseballs when we returned to his room.

I wasn’t going to ask to switch to a window room view while we were on the second floor….. because I thought we were going to be out of here by Saturday; but I did. If we are going to be here until next week; I will not survive without one. I feel like the biggest pain in the butt… as Dr. Maze said to me today, “What are we doing, playing musical rooms?” Made me laugh but that’s how it feels. What can I say, I’m a girl who knows how happy the little things make me and I’m not shy about asking for it. One of Ronan’s favorite things to do at night is to look out the window at the pretty neon lights that flash at the top of the new PCH hospital. He loves to say the colors out loud and we count the stars and say Goodnight to the moon.

Ronan is really missing his house and brothers tonight. He must have told me a dozen times how much he misses Liam and Quinn. It KILLS me to hear him say those words to me. I hate that he can’t be with them. He called tonight and talked to the boys’ for a while. I sat and while Quinn was on speaker phone and the boys’ went back and fourth telling each other how much they missed one another. It was heartbreaking and sweet all at the same time. After the phone call, Ronan and I spent the evening playing “lets throw the stuffed monkeys back and fourth to each other but not let them hit the ground due to the hot lava, game.” We played for a solid hour and he was laughing the entire time. We then went on a hut for our favorite nurse, Arica, and found her but she was in a room with a patient. She blew Ro kisses and came to visit us later tonight. Ronan was almost asleep but woke up as Arica was giving him kisses and loves, just so he could give her a smile and a giggle. I love that girl<3

Woody has been so busy this week that he hasn't been able to stop by the hospital to see us. Between his law firm and coaching the twins' two basketball leagues, he hasn't got a free second. Our catch ups have been consisting our our 3 minute phone conversations about 10 times a day. I HATE THIS. I miss my husband, my twins, my house, my old normal everyday life. I am tired of falling asleep listening to the screams and cries of our roommates and their parents. I'm tired of the lack of privacy and this sharing room bullshit. It's bad enough that my child has cancer, but it's even worse the lack of privacy that comes with it. I know, I know… the new hospital will have it's private rooms. That does me no good as of now. I'm burnt out, I'm discouraged by all the sadness that surrounds me everyday. Listening to the screams at night haunts me and is another huge reason to why I never sleep well. I know Transplant is going to be hard, but at least we get our own room. Trying so hard to find the positive in anything and everything I can.

That's all for tonight. I hear some Coconut Water and a movie calling my name. I could really use a Margarita and some freaking chips and salsa. What I wouldn’t give for that. I need to get lost in something tonight, otherwise I’m going to lose my freaking mind. Ahh… spoke too soon. My friend Stacy just texted me to ask if she could bring me anything. My reply was, 1) A margarita, 2) Some Sangria or 3) George Clooney. Can you guess what she is showing up with?!?! Either way, I win!! YAY FOR GOOD FRIENDS!!!! G’nite dear darlings. Sleep well.

xoxo

Kathryn~ Thank you for the Star Wars picture you sent for Ronan that Annie Leibovitz shot and signed for him. He is going to freak out over the picture; I am freaking out over the fact that such an amazing, talented soul, took the time to do such a sweet thing for Ronan! Made my day!! Tell her thank you as well:)

Living is easy with your eyes closed

I have no idea what day it is even…. Wednesday I think? The days and nights are so blurry here and it is so easy to lose track of the time, days, and nights as they all seem to blend together. I do know that today is my dear birthday bunny, Jen’s birthday. Happy Birthday my sweet friend. Thank you for being a rock for me these past 5 months. I love you dearly<3 I hope you had a beautiful day.

My morning started off great with my friend Melissa bringing by coffee and her gorgeous smile for me. Ronan wasn’t up for visitors, kicked her out of the room, so we went into the hallway and caught up for a bit. Ronan would scream for me every so often so I would come and and tell him I was looking for Dr. Wood. He seemed satisfied with that answer so I was able to go back into the hallway and finish my conversation with Melissa. After she left, I was able to get out of the hospital today for most of the day. It was much needed and Mimi Kay and Papa Charlie came and sat with Ronan for me. So thankful. I can feel myself going a little stir crazy. It was nice to be out and about today. I returned around 5 to a happy Ronan and our 3-year-old roommate, Angel, who had been left alone almost the entire day. He sat and told me that his parents were never coming back. These are the same parents who left him alone last night for about an hour and when I went to ask Angel where they went he replied, “They went to smoke.” OMG. I spent the next 2 hours tonight tending to him and sharing Ronan’s popsicles and toys. I felt bad for the little boy. A 3 year old should not be left alone, EVER! He started throwing things at Ronan which in turn, made Ronan upset and the two of them were screaming back and forth at each other. Ronan ended up in tears because the roommate said to him, “You’re a bad boy!” Ronan looked at me and said, “I not a bad boy, mama!” I told him of course he was not but that didn’t stop the little tears from sliding down his cheeks. He is so tough but really got his feelings hurt tonight. There was not a nurse in sight up on 3 to handle this, so I did best I could. That floor 3 is a little coo-coo. Dr. Eshun gave us the green light to move to the 2nd floor tonight, thank god! We moved down here after the Angel incident and his parents had still not returned. We are just happy to be out of that room and down to our fun floor with the BEST nurses in the world. They were all so excited to see Ronan and he was just as happy to see them. The 2nd floor is like our second home now… it was weird to be here, but not with our “family.”  Somebody even wrote, “Rockstar Ronan,” on the whiteboard where all the nurses/patients info goes…. so cute that they know his nickname:) We are happy campers to be back down here and Ro baby is sound asleep. His ANC was still at 0 as of this morning. UGH. Please let it come up tomorrow. We are itching to get out of here and be back home.

Somebody sent some goodies tonight and I have no idea they  came from, as there was not a card. It was a bag full of some Star Wars toys, some fun books, Coffees for me…. Any takers??!?! Please let me know who you are… I would like to give you a proper thank you. It made our night! Ronan has been having a blast with his coloring books and little light saber racing car. THANK YOU!!!!!

I’m getting anxious and homesick tonight. Hoping I can unwind with a movie or something. I could seriously use some yoga in my life right about now. I feel like I have a lot to say, but my mind/body/soul is shutting down. Hospital exhaustion is kicking in. I am so thankful for my thoughtful husband and the Bose Headphones he bought me for Christmas. Music is saving my life through all of this…. thanks Wooddawg for being so thoughtful all of the time. You are the best gift giver in the entire world. Hope you all have a beautiful, blessed night. Sweetest dreams!

Extra special dreams tonight to my dear Charisma. I told you all the stars would end up aligning for you. More good things to come your way my dear. I can feel it!!

xoxo

Serenity now

Deep breaths and an amazing friends have gotten me through this past 24 hours. We were admitted into the ER last night around 9:00 due to Ronan’s low grade fever. I didn’t have to wait in the waiting room of the ER; THANK GOD. It was beyond packed even at 9:00 at night. The doctor on call, called ahead to let them know I was bringing Ronan in. As soon as we arrived, I told them our name and we were taken back into a room in the ER. Ronan was really not feeling well and was so tired. He passed out pretty quickly as the nurses checked all his vital signs and drew his labs. My friend, Fernanda, sent me a text to say she was on her way to sit with me because she did not want me sitting alone. She came armed with Starbucks and a big hug. We sat for the next 5 hours, trying to get Ronan into a room on one of the floors. Fernanda was on a war path…. but in the sweetest way so. There was nothing the nurses/doctors could do as they kept telling us all of the rooms were full on the floors 2 and 3, which is where we were supposed to be going. We used every trick in the book and Fernanda even tried to bribe one of the nurses with some Oreos that she bought in the vending machine. Didn’t work, but we got a chuckle out of it anyway. Finally around 3:15 a.m., the nurse said we would just have to spend the night in the tiny, freezing cold ER room. I was not a happy camper, have been saying some not so nice words, but have now relaxed due to Ronan looking and feeling 100 times better than when I brought him in here. Dr. Maze came and helped me out around 8 a.m. by using his very charming/stern words to explain that we needed a room asap. An hour later we were whisked off to the 3rd floor. Thank god for that man.

I got about 3 hours of sleep last night and I’m sure Fernanda didn’t get much more, but guess who was here at 9:30 a.m. to bring me coffee and keep me company? She was. Did I mention that my darling Fernanda has 5 gorgeous children of her own all under the age of 7?? Talk about an amazing woman and friend. Ronan didn’t even mind her being here and that is unheard of with him! I ran home to shower while Fernanda stayed with him. Made my day! He always throws a fit when I leave him, but was completely fine with this friend of mine whom he hardly knows. After I returned back here, Fernanda left and I thanked Ronan for letting me go home to shower. He said to me, “Your welcome, I like your friend.” So sweet!!!! He also was sure to tell me how much he missed and and how he loves me to the moon and back. Ahhhhh, little man!!! That more than made up for the recliner chair I had to sleep in last night and my seriously jacked up back today:) He seems to be feeling much better but just as I suspected, his ANC is at 0 and he needs blood. We will be here for most of the week I suspect. Fernanda…. I’m never going to stop telling you thank you for being such an amazing friend to me. And stop with saying it’s nothing…. because it is, and it means everything to me! I am so blessed to call you my friend. I love you.

Sarah came over this morning to help get the boys ready for school and to take them as well. Thank you so much, Sarah the Saint. Auntie Karen picked the monkeys up from school with her daughter Olivia and took them home to do homework and then to get some dinner until Woody got home from work. Thank you both so much; I am so thankful that Liam and Quinn are in such good hands.

I am running on empty and have downed 2 giant cokes, 2 coffees, and a ton of water. My typical hospital meals. Ronan is sleeping now and they are getting ready to pre medicate him for his blood transfusion. I am trying my best to channel all of the inner peace and strength I have for this weeks hospital stay. I am calmer than normal and it has everything to do with the fact that Ronan seems pretty happy to be here. I found myself thinking selfish things today like, I so need a massage, a pedicure, a spa day, a bath and 12 hours of sleep to feel better. It turns out I needed none of those things because just having Ronan acting somewhat like his normal self and being so loving and sweet to me, made all of the whining and complaining I was doing in my head, disappear. I think he was feeling really crummy at home and now that he is starting to feel better I can see him coming back to me. He is comprehending so much these days for only being 3 1/2. He is confused as to why we are on the 3rd floor and keeps asking for his normal nurses like Sara, Arica, Danny, Kathy, and Amy. I tried to explain to him that it is because he has a little cough that we have to be on the third floor for the time being. With it being RSV season, any little sign of a cough and you are banned from the 2nd floor. Tonight, he was telling me about all the people that take care of him and who love him. He named Dr. Wood, Dr. Maze, Sharon, “A,” and then he goes and Dr. La Quaglia took the big Death Star (he calls his tumor the death star from Star Wars) out of my tummy. He even pronounced his name right which was so dang cute. Ronan is so smart and doesn’t miss a beat. I’ve got to start watching what I say around that kid:) We have had a great night together but are so beyond tired. I’m hoping to get a little sleep as I am exhausted from the happenings of last night and the 3 hours of sleep I am running on.

Here’s to hoping tomorrow will be even better as he starts to get his strength and health back. We’ve got to get him well before transplant and I would like to be able to enjoy our time at home before we go in for the long haul. Thanks for checking in and keeping Ro baby in your prayers and thoughts. We are so lucky to have all of you thinking of him. G’nite sweet friends. G’nite Daddy Woo. Hope you are enjoying our big bed all to yourself:) Miss you.

xoxo

Open Your Eyes

All this feels strange and untrue
And I won’t waste a minute without you
My bones ache, my skin feels cold
And I’m getting so tired and so old

The anger swells in my guts
And I won’t feel these slices and cuts
I want so much to open your eyes
‘Cause I need you to look into mine

Tell me that you’ll open your eyes [x4]

Get up, get out, get away from these liars
‘Cause they don’t get your soul or your fire
Take my hand, knot your fingers through mine
And we’ll walk from this dark room for the last time

Every minute from this minute now
We can do what we like anywhere
I want so much to open your eyes
‘Cause I need you to look into mine

Tell me that you’ll open your eyes [x8]

All this feels strange and untrue
And I won’t waste a minute without you