Sleeping

There is one thing for certain on this journey. Expect to experience almost every emotion known to man, woman. I can remember the 1st day  we came to Nationwide Children’s Hospital. I remember how anxious and scared I was. I remember not wanting to leave Jaylon’s side for fear that he would want something or need something and me not being there to get it for him. I remember when I 1st saw his hair on his pillow. I knew how upset he would be and so I kept turning the pillow over or replacing the pillow cover. I remember the dread in telling him about his hair, I couldn’t keep hiding it. Ican recall when RJ came in to make the donation. I felt torn between my 2 sons. How can you decide which 1 to go to when you want to be there for both of them. I can recall the relief I felt when the transplant was over and my boys where right down the hall from each other. I could walk from door to door to check on them. Dad and Sierra where around to help however, for me, no one can do it like Mom!

 And so now we’ve come to the next leg of our journey. Jaylon’s counts have started to come up and it looks like RJ cells have started making their home in Jaylon’s body. The Dr.’s have told us that if Jaylon’s counts stay up for 3 consecutive days we can start  planning on going home. Plans to go home means that there is a lot to do. Vents have to be cleaned, carpets shampooed (no shoes in the house), dusting everything that is in the house and plants removed. All 17 of them! Jaylon will also have to be weaned from all most of the medications that have been placed in his port and begin to take things by mouth. It will be challenging since chemo also burns the taste buds in the mouth. Time and time again we have offered Jaylon something to eat – jell-o, icee’s or yougurt and the answer is always “No”. Eventhough he hasn’t had anything to eat, by mouth, he has gained about 7 pounds and has gotten taller!

I’m anxious about going home, apprehensive really. Will I be able to do care for his port correctly? I have visions of forgetting to clamp 1 of his tubes and come back to find him bleeding everywhere. Will I be able to keep him, his room and the house clean enough and free from virus? What about the H1N1 virus? Will I be able to protect him from that? Take a deep breath, 1 thing at a time, 1 hour at a time, 1 day at a time! You will have help. You can call the nurses if you need to. There’s always 911.

It is so amazing what these kids go through. As adults, at least for me, I’m not sure that I could have handled everything that Jaylon has been thru as gracefully as he has. He hasn’t complained once about any of the things that he has been thru.

Unfortunately the fight can sometimes be bigger than the child and try as they might, with all of their hearts, sometimes these illnesses win. Such was  the case for our “ family” down the hall.The young man faced the giants of giants, and did so with honor but was called home. So as I delighted in our news of going home, it was a different “going home” for him. Our hearts and prayers go out to this family who was there for their loved one and stayed there comforting him thru is last breath. Rest well little warrior, rest well.

On the 5th floor of Nationwide Children’s Hospital is where we reside. On the floor are families that have come from different parts of various states hoping to offer their child the chance for a better life. We exchange pleasantries as we pass in the halls and some times, late at nite we have our own parent conferences.We discuss the diseases that have taken up residence in our children’s bodies. We talk about how long we’ve been here, what symptoms we are having, what has worked when they were at the same stage. Some times we embrace and cry and pray. These people that we came in here not knowing one another have become family. We have become reliant on the encouragement that we hear while passing in the hallway.

There is a little boy, on the floor, who is 8. Very close to the age of my Jaylon. This young man and Jaylon were in PICU at the same time. They stayed about the same length of time. They came back up to the floor the same day. They too have a bond. They share the common thread of a journey in hopes for a better life. I had a chance to talk to the father of this little boy while we were in PICU and he told me about the struggles that his son had been through and was still going through. We spoke for a while and parted agreeing to pray for one another. I hand’t seen the family for a while and then when I did I was told that his illness had progressed and that the prognosis was about a week is all he had left. My heart sank. I can only imagine how this family must ache. Watching each breath, wondering if it will be the last.

I’m praying for you precious one. I am praying for your family who will miss you so. I’m praying that God will meet you where you need to be met. And if it is His will, at yourappointed hour that He will cradle you in His arms and hold you, give you the strength to go on.

There is a rule on the floor that when something falls on the floor it stays there and you kick it out. As parents, on J-5, we have our own rule about the floor. When we fall on the floor, too tired, too weary to go on, when our hearts fall on the floor as the resut of news or test results, when we fall on the floor because we have lost our journey, we pick each other up. We hold each other up, we take steps for each other until we can go on, on our own.

This “post” today is dedicated to my family on the floor. Please pray for them. They need the prayers and strength of many.

Denise

A.M.

Today, I gave  myself a break. I turned the alarm clock off (on purpose) and allowed RJ to sleep in. I wasn’ being thoughtful, I was being selfish. I wanted some time to spend with RJ and talk about school and football and classes and anything else that he could would answer. So I drove him to school and allowed my break to linger for just a while longer. Yesterday was an anxious day. Watching the rash appear in one place  and then the next. Waiting for the Dr.’s to come and give an answer or a thought, something encouraging, something  just to let us know that we were still on course. Unfortunately test results don’t come back that quickly.  So, I gave myself permission to enjoy the warmth of the sunshine, run some errands and just allow myself to be for a while. Rick had called and reported that Jaylon had had a good nite, he was able to do about 5 minutes of stretching and exercises and that the Dr.’s had come in to take a sample of the blistery rash on Jaylon’s bottom. Still no test results.

P.M.

Enerized by the sun, fortunate to find a parking spot on the street, I arrived at the hospital in a much better mood than when I left. Jaylon was sitting up, slight smile on his face and I was happy elated to see a glimpse of the Jaylon that had checked into the hospital. The Dr.’s came shortly after my arrival, still no results but just to check the progression of the rash. The remainder of the afternoon and into the evening was pretty much the same with a few exceptions. Jaylon had stayed awake the better part of the evening, he was able to make a few phone calls to say “hi” and he went to sleep with a smile on his face.

The Dr.’s may not have been able to give test results but Jaylon certainly did make the difference between day and nite.

Keep praying, I believe a change is right around the corner!

Denise

He re we are at Day +18. At this point, the Dr.’s say that we should begin to see some engrafting. Engrafting means that the donors cells have become present in the body and try to establish themselves in their new home (Jaylon’s body).  Over the past few days Jaylon has developed an unexplained rash. Additional blood cultures have been taken as well as nose and mouth swabs. The rash seems to have a mind of its own and each day I see a new splotch on a different part of his body. It has been difficult to sit and watch and wait but, for now, that’s all we can do.

This morning after I had bathed Jaylon we had a few minutes to sit and talk while we waited for the dust to settle in his room. I asked him if he thought it would take this long to get rid of his sickle cell disease. He looked at me and sort of shrugged his shoulders. He has been such a trooper through this journey and I admire the fact that he takes each new obstacle in stride and just keeps looking  forward.

It is still difficult for me to write each day. There are so many thoughts and questions that go through my head. So I mostly sit and hold Jaylon’s hand and wait for him to ask for water or to go to the bathroom. I sit and watch him sleep and at times he will smile in his sleep and I imagine the  sweet dreams or conversations  that are going on in his head.

I want to thank everyone for their prayers, cards and concern and also for offers to help. It has been the prayers of many that has sustained us and kept us grounded. Please keep us lifted in prayer as we continue to watch and wait.

Until next time – Denise

I remember an incident that happened to me when I was attending Ohio University. A friend and I were about to cross the street to go to the athletic complex. Distracted by someone that had called out to me, I started to cross the street without even looking. Just as I was about to step out into the street, a hand reached out and pulled me back from what would have surely been my last moments. That hand saved me from a semi that was barreling down a small hill, passing through campus. Over the years many years I’ve often thought about that incident and wondered if it was my friend that saved me. In my heart of hearts, I know something different. I can still remember the touch of the hand that pulled me back, a touch unlike any other. It was the touch of my friend…..my friend Jesus. Just as that moment has been with me all of these years, I’m certain that “Day 7″ will be with me the same.  It has been difficult for me to write, in this, my daily journal. It has been difficult for me to be away from the hospital. When I am away, I am always checking. Checking my phone for a missed call, checking with my Mom (who has relieved me) to make sure Jaylon is ok. Checking with the Dr.’s to make sure that we are still on course.

There is something about one of those “experiences” that sets you on edge. Not sure of what to do or expect next.  One of those experiences that can freeze you in that place or moment. As difficult as it has been, I’ve got to move forward. Move forward with a confidence that whatever happens, or changes, that same friend that saved me back at O.U. will meet me where I need to be met. Will have already prepared a place for me to rest, to rely, to cry, to rejoice.  I said previously that I was going to take advantage of each new day that has been given to me. You can’t take advantage of a gift if you’re frozen in the moment. I’m going to take it as a wake-up call, a reminder that I’m not in this alone. That there is someone greater than I. And that no matter what the outcome when I get there, I’ll be ok.

Day 7 started out ok. Although the day seemed to be ok, somewhere in my mind things weren’t just right  Dad had spent the nite and I had spoken with him about the nite’s events. Jaylon didn’t have a restful nite, had been up going to the bathroom and had gotten sick a couple of times. We ended our update and I let out a sigh of relief, thankful for anther day. Still, something just wasn’t settled. Sort of like a person with arthritis can tell you when it’s going to rain. As I prepared myself for the days activities, the phone rang. Dad was on the other end. “Honey, we have a small emergency, can you come right away, Jaylon isn’t responding”. Before I could even acknowledge what he was saying, I had disconnected the line. Scared and dazed by what I had just heard, I must have turned around in circles for at least 30 seconds. I couldn’t find my clothes or shoes and couldn’t put together what I needed to do next to get to my son. Presence of mind finally kicked in and I dialed my Mom to ask her to meet me at the hospital. If the worst was about to happen, Rick would need some support and Mom was only 5 minutes away. As I dressed, I woke RJ to tell him that I was leaving for the hospital. He asked what was wrong. Not wanting to alarm him, I just said Jaylon wasn’t doing well and I would be back. Missing all 13 stairs of the staircase, shakily, I managed to get into the car and down the highway, praying all the way. I called Sierra (our daughter) and asked if she would go and be with RJ.  Sierra and I often know what one another is thinking so I didn’t have to say a lot. I briefed her and she was in route. The 2nd call I made was to my Aunt Janet. I needed her to call my Dad for me and also to pray as I drove beyond the speed limit to the hospital.  I arrived at the hospital in record time and a parking spot was waiting for me. Trying as best I could to run, my mind was moving but my legs weren’t willing to cooperate.

 I got to Jaylon’s floor and passed a nurse that has been assigned to us from time to time. Her eyes seemed to be red from crying. In passing I asked “Is Jaylon O.K.”? Her response seemed to be a response that you didn’t want to hear. “I’m not sure”. Out of breath and at Jaylon’s door I wasn’t prepared for what I was about to see. Jaylon’s face and eyes were void of any emotion. Drool was coming from his mouth. Oxygen mask was in place.There were more Dr.’s and nurses in his room than had ever been there at one time. Both Rick and my Mom had eyes filled with tears. Jaylon wasn’t responding to his name, questions or anything. This beautiful little child that I have been loving for the past 7 years wasn’t there. It turns  out that Jaylon has had a reaction to one of the medicines used for the bone marrow transplant. Jaylon has had a seizure! A million questions came to me. Can he recover, are there permanent complications, what happens next? Our wonderful team of Dr.’s took every opportunity to answer all of the question while stabilizing and testing Jaylon to see if the seizure was still active. Praying, talking to Jaylon and trying to help my husband be calm, I began to question myself again. Wondering if we had really done the right thing for Jaylon, had we placed him in harms way, would I loose him? Not wanting the latter to be true, I began to focus on letting Jaylon kow that I was right there with him. How brave he is to face all off this. Not to be afraid that we were almost at the finish line and that we would be victorious.

We were told by the Dr.’s that even though Jaylon wasn’t responding he could hear us. It was important to me for Jaylon to know that we were there every step of the way and that it was important for him to be strong and to push through this valley that we had found ourselves in. Jaylon’s breathing was shallow and a tube would need to be inserted to help him breathe better. He would also be admitted to the Critical Care Unit so that he could be watched closer. As the Dr. inserted the breathng tube through Jaylon’s nostril, Jaylon began to fight back. The Dr. assured us that this was a very positive sign that Jaylon was no longer seizing. A good step forward. The after affects of the seizure is extreme tiredness. Slowly Jaylon returned, a smile, an opened eye, a call for Mom or Dad.

Our lives have been forever changed by this day. The outcome could have been so different. On this 7th day of Jaylon’s 7th year God chose to allow us more time with his precious gift. And I am reminded that Jaylon has only been loaned to us to care for as long as God allows. I’ll not take any of these days for granted.

Conversation(s) Help Emotions Move On- Last nite was parent/student orientation for RJ. He will begin Upper School on August 24th. After signing authorizations and releases (always necessary these days) RJ, my husband and I had some time to spend with each other before we had duty back at the hospital. My Mom had agreed to come and sit with Jaylon while we went to orientation. These past weeks, our family time has consisted of updating each other on meds etc. as we passed in the anteroom, or coordinating who would pick RJ up from practice and whose turn it was to stay at the hospital. Needless to sayNo, I’m gonna say it – I WAS TICKLED BEYOND PINK to have some quality time with 2 of my favorite guys. Since no one had eaten, and RJ was hungry (he’s always hungry) we decided to sit down and have some dinner together.

Just for a little background, RJ doesn’t talk about what he is feeling or thinking. Hmmmm, I wonder where that comes from? For a clue refer to post “A different Point Of View”. So dinner is going good, we talked about football practice, academics, time management of homework and athletics. Imagine my suprise when I hear the following question “Why is Jaylon so different”? At that point it dawned on me that we had never really had a conversation with RJ about the physical and emotional changes Jaylon might go through as a result of the BMT. RJ used this morsel of family time to really open up and talk about his feelings and have his questions answered.

There have been changes. Some noticeable ones. Each day when I bathe Jaylon I notice how much darker his skin is. Not all over, just in patches. As though it has been burned. Jaylon doesn’t talk much now. He just shruggs his shoulders or nods his head when appropriate. The mouth sores have taken up residency in his mouth, throat and stomache. We sit in anticipation of a laugh from him and try to do things that had previously evoked laughter or at least a smile. We sit in vain.

And so, we talked, we explained, we listened. We allowed our emotions to move on. We allowed them to move to a place where there was a deeper understanding of what this journey was taking us through as a family. We moved on to an understanding that it’s ok to express your feelings and concerns, to ask questions and have answers, that doing so was actually healthy.  And I moved on to a realization that my son, at age 13, is really coming into his own. And that with a little more guidance he will certainly grow into a man that will have a lot to offer.  A man much like his father.

I’ve also come to another realization. I’m going to have a conversation with Jaylon. Perhaps in my attempt to spare Jaylon of any undue worry, I didn’t give him enough credit for being able to understand this process. Maybe I didn’t give him the tools to move through this emotionally.  Perhaps Jaylon is waiting for us to have a better more open conversation about this process so that he can move on. so that he can have his chance to ask his questions and get a clearer understanding. We’ll talk more about the tubes and how they won’t be a permanent part of his body. We’ll talk more about the medicine and that this sick feeling in his stomache will go away. We’ll talk about the mouth sores and that soon they’ll be healed and he can eat again.

These 2 young men are pretty amazing to me. This journey has given me a new appreciation for them. Tomorrow, I WILL have a conversation with Jaylon and I will listen and I will answer and I will allow him to move on.

I can remember, as a little girl, sitting with my grandmother when it would storm outside. She would go through the apartment turning off the TV, the lights and she wouldn’t answer the phone. She would say, “Honey, when it’s stormin you’ve got to sit down and let God do his work”!  I always wondered what she meant when she said that but, I knew that meant that she would hold me close to her and we would share a language devoid of words. Those are times that I will always hold close to my heart.

These past few days have been quiet times for Jaylon. Not much to say because of the mouth sores that reach all the way down his throat and the thick mucus that makes it difficult to swallow.  These are the days that God is working on him, Comforting him and talking to him in a way that needs no words. Heling him. I know this because while Jaylon is sleeping, he is peaceful and completely at rest.

These are the days that God is working on me. Drawing me closer to Him, causing me to be more dependent on Him, relying on Him to guide us through this journey. In the quiet He ministers to my soul and invites me to leave my cares.

This journey, Jaylon’s Journey, has been about a lot of things. It has brought me closer to my family, it has shown me the generosity of others, it has taught me the importance of living each moment.

As Jaylon sleeps, I lean over, complete with mask and gloves, to kiss him good nite. He reaches over and pats my back and in our language he lets me know, It Is Well.

Job 2: 4-10   

Resting

Today was our big day! RJ came to the hospital at 6am this morning in preparation for his part of the Bone Marrow Transplant. RJ has been more and more anxious as the day came closer. He never waivered about his decision to give this enormous gift of  life to his adoring little brother. Both of my sons were headed for a journey that we had led them to but, would ultimately be completed by  just the two of them, each there for the other.

I had spent the night with Jayon in what would be his final night with Sickle Cell Disease. I lay sleepless on the sofa reflecting on all of the things this amazing little boy has been through since birth; premature, low birth weight and Sickle Cell Disease. Some pretty tough obstacles but determined to make his place in the world. I thought about RJ and how at the last week of my pregnancy with him he decided to turn around and present bottom 1st. I remember the Sunday in June when he fisrt started cooing and how he loved to hum as we fed him in his high chair. I thought about what this transplant would mean to these brothers as they got older and looked back on this incredible journey. I am so proud of the both of them and honored that God chose me as their caregiver.

 

After admitting RJ to the hospital Dad came and spent time with Jaylon and I went to spend time with my 1st son. When did he become so grown-up? As I looked at him perhaps what I was seeing was a young man who has put aside his fears and was offering the best of himself to his little brother. Thank you RJ for being a selfless young man and for realizing at such a young age the importance of giving to others.

At approximately 11:40 am the donated bone marrow was transported to OSU for processing and RJ was in recovery. All was well. At 4:30 pm the courier departed for OSU to pick up the processed marrow. At 5:40 pm the donated marrow was hung and drip by drip Jaylon begins the final leg of this Bone Marrow Journey with a push that he has recceived from his brother.

We still have a few uncertain days infront of us but I’m certain they won’t be anything like what they would have been, living with Sickle Cell Disease.

Thank you for allowing me to share this very personal journey with you. Keep the prayers coming.

It's In the bag. Life more abundant.

I was discussing (as always) the Bone Marrow Transplant with a very smart lady. She told me that this Bone Marrow Transplant was going to be like an airplane ride. I thought she was talking about the ups and downs and the bumps along the way. What she said next has been my mantra over these past few days of highs and lows. She said to me “Denise, when you’re on an airplane and they are giving instructions about what to do if there should be a problem on the flight. ” “The first thing that they tell you is if you are traveling with children, put the mask on yourself first and then the child”. What good would I be to Jaylon if I was passed out? And so, that’s how it has been since August 3rd but in a different way sort of. I’ve been masking my feelings,  fears and emotions, for Jaylon’s sake. Always trying to keep myself  busy caring for him, running home to do laundry, trying to clean house, hugging my husband. Covering up, burying, ignoring, minimizing what I was feeling. I’m not trying to portray myself as some sort of however, I do think as mothers we tend to ignore ourselves for the sake of our families.

Today was another day, picture perfect end of summer day. The kind of summer day when you gaze into the clouds, imagine all sorts of shapes and figures and put all of your cares into perspective. I saw my grandparents there, Ambrose and Myrtle Campbell, they were cheering me on, keep going Deni girl(that’s what they called me) keep going! Then it hit me. There were no more diversions, no more “Thank You” cards to write, no laundry to be done and Jaylon was asleep. I was alone and I could let go and so I did. I let go physically, emotionally and mentally. I let go of the hurt and helplessness I felt when Jaylon voided all of the chemo  and antiviral medications into my hands. I let go of the pent up anxieties I had when his counts were low. I let go of the fears I have, seeing the 1st of many mouth sores that appeared on his angelic face. And…… when I was through I let out praise to God that He has carried CARRIED us this far and that He is still here even in the darkest moments.

A Mother’s love is like no other. There to carry you when you’re to weak to carry yourself. Care for you whether you want it or not. Correct you whether you like it or not. And so Jaylon , here I am, ready for whatever you need. I have my mask on, I’m protected and so are you.

If you are blessed to still have your mother, or you know a mother that has lost her child, reach out to them today and tell them Thank You!

Thank you to my Mom for coming to the hospital each day, when her arthritic legs tell her not to. Thanks to my Bonus Mom for pitching in to pick up my son from football practice. Thanks Mom, Thanks Moms, Thanks Mom. Thanks to all of the Mothers in the world. Where would we be without them?

Lovingly – Denise