Our New Normal….
I know that I have not updated in over a month and a half…sometimes it is very difficult for me to put into words the depth of our experiences. The range of emotions that I feel, that our family feels, from day to day, or even hour to hour is so hard to actually convey. There are so many moments that I play over and over again in my head…..the weeks and days before Joey was diagnosed….the day I received that dreaded phone call from our pediatrician…and most of all, the actual moment I was told he had Leukemia. Sometimes, it is almost impossible to comprehend that is it been almost six months since these moments and yet, at other times, it feels like we have been fighting for a lifetime. Sometimes, it still feels suffocating, impossible to breathe. Sometimes we take it a day at a time, sometimes; we take it an hour at a time. Every mother I know worries every day, but I feel like my anxieties and worries are heighten and sometimes uncontrolled. So I thank all for being patient with us and walking this journey with us; even if you do not know the specifics from day to day. Some details of this journey may be private, but truly most of my feelings and emotions are just too complex to describe….and I hope none of you ever has the words or feelings to understand them.
This last round of treatment was very different, in that Joey received all his treatments inpatient, (in the hospital). There were four scheduled stays, and they were supposed to last approximately four days. Our first stay was completely routine. He received a twenty four hour chemo drip and then on the fourth day he was able to be released. However, the next three stays did not go as planned. In ordered to be released, Joey’s body had to clear the chemo. Although, nothing medically was wrong, his body was not clearing the chemo as quickly or efficiently as the doctors had hoped. It became a long arduous process. And the longer the chemo stays in his body, the more sick Joey would feel. He suffered greatly from the side effects. It was awful watching him feel sick, tired, and defeated. Most of all, he just wanted to go home, sleep in his own bed, cuddle on his own couch and we couldn’t give that to him. As a parent, you feel desperate and inconsolable, and gutted when your child desires something so basic and you cannot provide it for them. Being stuck in the hospital for long stretches of time, gave me lots of time to think and also gave me great perspective of this journey that we are on. I would often gaze outside the window and look at the cars moving quickly up and down the street or planes gliding across the sky and think, what I wouldn’t give to be in that car or plane.
I am so sad for Joey that he is not playing baseball on a team with his friends, and that he had to miss his class field trip and countless friends’ birthday parties. It broke our hearts, that we could not attend our nephew’s communion and be with our family. But what I was learning sitting in that awful yellow colored hospital room that I often thought looked like the color of vomit, was I will never take normalcy for granted ever again. Whether it is driving back and forth to sports practices or games, birthday parties, traffic to work, or even dreaded food shopping…I will be grateful for the normal.
We were released from the hospital right in time to be home for Mother’s Day. It was the only place in this entire earth that I wanted to be….home with my Joey. As we celebrated the day, I was acutely aware of all the mother’s that have surrounded me so fiercely on this journey. Every single one of you have been an angel. People say to me all the time, “I don’t know how you do it,” and my response often is, “You don’t have a choice, he is my child, you do it because you have no other choice.” Being a mom, means that you never stop fighting, never stop giving.
So now that we have finished this round of treatment we are having some much needed time off….no treatments, no hospital visits…NOTHING!! And it feels great!! We all are feeling great!
So what is next, we start our next round of treatment on Tuesday, May 30th, it is called Delayed Intensification. This round is the last of the front line treatments for Joey, (if all goes according to plan). It will last about two months, but it should be all outpatient, (if he does not get sick with a fever or other complications). However, from everything that we have researched and been told, it is supposed to be one of the most grueling stages of treatment. We are trying to prepare ourselves…but I question anyone, how to you prepare yourself to watch your child suffer?
I am trying desperately to live in the moment and enjoy him today. Listening to him laugh, play baseball in the front yard, ride his bike and play with friends, but in the back of my mind, like a ticking time bomb, I can feel the time closing in. I am praying, pleading with God, that he will watch over Joey in the upcoming weeks and months and not let him suffer. I pray that we have the strength to endure this process and can give Joey the love and support he needs to fight. And I ask all of you, please pray along with us that we endure this next stage of treatment with little to no side effects.
As I prepare myself, my son, my family for this next stage of battle, we are continuously grateful for all of the continued support, love and prayers from our friends, family and community.
A new meal train has been created, so on the days that treatment is scheduled, we do not have to worry about cooking. Treatment days can be long, lasting anywhere from four hours to eight. The meal train has been amazing and we have learned that so many of our friends are amazing chefs! But seriously, when we get home from the clinic, we are all exhausted, mentally and physically and the last thing we want to do is cook…but believe me we are usually hungry…so thank you for feeding us with your love!
People continue to text, email, Facebook message us daily ad ask what else can they do to help. You can always donate directly on our Mayday Missions website or sign up to bring us a dinner. But we have now also created an Amazon Wish List. During the demanding weeks of treatment, even sometimes running to the grocery store or any store is complicated. The list on Amazon is a public list, called JoeyBStrong. This list is complied of several types of things; one being household cleaning products that we use daily to keep our house as clean and germ free as possible, as Joey continues to remain immune suppressant throughout his treatment. Additionally, we have added some bed linens. Unfortunately, Joey does become ill and we often are changing sheets several times a day and it would help to have extra sets in our home. And as one can imagine, we are doing laundry almost around the clock. Joey is also using a soft brush tooth brush that is gentler on his gums, to prevent bleeding. Due to germs, his toothbrush has to be changed very frequently. We are also using a calorie enhancer called Duocal. It is extremely important that Joey maintains his weight, so that he can handle the side effects of the chemo. I put this calorie enhancer in his water, soup, pasta sauce, and wherever else we can get creative! You will also notice on the list I have put some insulated cups; these cups not only keep his water cold, but also hide the calorie enhaner when I mix it with his water. I have also put some organic sunscreen on the list, as it is extremely important to have him protected this summer while in the sun. Another item on the wish list is the Wii Fit. Joey has been receiving Physical Therapy services through the hospital for several weeks now and it has helped him immensely. Due to one of his medications, one the side effects, is possibe issues with balance and or difficulty walking. The Physical Therapist mentioned the Wii Fit as a good at home resource to help Joey when its too hot out to play or when he only has the energy to do a small amount of activity. We are also seeing that when in treatment, Joey has been especially thirsty, so it is helpful to have extra cases of water on hand whenever possible. There are some other products on the list that are self explanatory….but this is our new normal now.
Six months ago, I could have not imagined this would be our lives…things can change in an instant. Like I wrote above, I go back to these moments all the time and think about what I was doing, what the expressions on others faces were, what the smells were like….I felt like the world stopped…but the truth is, only my world stopped. My normal changed….and for the rest of my life the word normal will take on an entire new meaning…the new normal.
Thank you again for always supporting, loving, and praying for us….Tuesday, May 30th we begin another step in our journey, please keep us in your thoughts and prayers. We are able to fight, keep hope alive and move forward because you have fought besides us….