Ok, so I was going to ease people into the fact that I went on vacation by myself, (that is without the family). But I guess Doug took care of that! I’m trying not to feel guilty, but our trip has been planned for an entire year and with all that we’ve been through I REALLY needed it!!! Although Adelaine’s counts are still terrible, she seems to be feeling herself, minus the steroid-induced outbursts, which is yet another reason to feel the need of a vacation! Worse case scenario, I simply leave the little beach bungalow and come home!
After the trauma we went through with Adelaine last week with her relapse scare, it took roughly two days before I was even ably to speak a coherent sentence. I needed some time to let it all settle into my mind before I could process any of it into words…
Thankfully Whitney (from Sea World) had come to spend four days with us, she was planning to leave Tuesday early afternoon, but she stayed until that night until we found out for sure about Adelaine. God had her there with me at the clinic Monday morning, I know He planned it that way. It was the second biggest nightmare of my life. Last time we never woke up from the nightmare, we just had to re-adjust our lives to it. This time thankfully we did wake up, but it was a very disturbing 24 hours. I say disturbing not just because we were told that Adelaine had most likely relapsed, but it was also disturbing because of how we were told and the events that took place right afterwards.
I knew she wasn’t feeling well that morning. When we were getting ready to leave she put her head down on the step in the garage which wasn’t like her at all. Her coloring looked off and overall I could just tell that something wasn’t right. When we got to the clinic I asked to see her blood results before they shot her up with more chemo.
The next thing I know the P.A. (Physicians’ Assistant) comes in and announces that she knows why Adelaine is so sleepy (she was taking a nap in the stroller), then she said her hemoglobin is low, hew white counts were way off and they have put some of her blood on a slide to check for a relapse.
It was like she was saying, “for lunch we are ordering pizza, I’m not sure if we want to order plain cheese or pepperoni”.
The next words out of my mouth were, “Why are you standing here telling me this. My blood just ran cold. Go test her blood. ..Please”. Then she pulled sleeping Adelaine from the stroller and looked her over. I felt very venerable at that moment. I knew that we were on the fence and things could go either way. It was a paramount moment in my life. I know how things go in a relapse, I’ve seen it over and over again at the center…
I know that you don’t just simply start over with treatment. It’s starting over alright, but in a whole new way. The chemo is much more rigorous and intense. Their little bodies are poisoned literally until the brink of death. If they do make it through, it’s nothing short of a miracle. The long-term damaging effects are very real. Not to mention the suffering these precious little children endure.
Honestly, watching Adelaine suffer all those months was an unimaginable. It felt like I was in hard labor for 9 straight months, during the worst of her suffering. I felt intense pain from the core of my body. Every hour that went by felt like an eternity. I felt exposed and vulnerable. People would stare strangely at us when we were out, and we never knew what would come out of their mouths. I did not know what the outcome would be. In the end would Adelaine be alright? Would she really make it through? I felt like her suffering would never end, like it would go on forever. All I could do was hope and pray that we would somehow make it through.
When I think back to on those dark days for Adelaine, my heart just sinks. Some people say, “It’s a good thing that she is too young to remember all this”. It doesn’t matter if she remembers it or not. Her pain and sickness was very real, her suffering was very real. If she remembers or not, my precious baby suffered and I was there, I saw it. It was very real. Our little angel suffered hours, weeks, months before she finally got better. Her suffering was mostly behind closed doors, but I was there and I will never forget…
This is where we’ve been, and the P.A. comes in and makes her little announcement. I just stood there devastated, tears began dripping down my cheeks. Finally she leaves and a few minutes later an oncologist comes in. She goes over Adelaine’s counts with me and explains that the large decline from two weeks ago is highly unusual. Her white counts were normal then, but today they were at 0.7. The normal range is from 4.1 – 12.0. She went on to say that if Adelaine was a “normal healthy” child and got these results from her pediatrician, they would refer her to an oncologist. She said that after reviewing her slides, she didn’t see and irregular cells, but because her white blood cell count was so low, she didn’t really have anything to look at. They just really weren’t giving us much hope at all.
Next, they said they wanted to pull bone marrow the next day to test for a relapse. Her red blood cell count was alright, but they needed to do a blood transfusion so it would be higher before the test. Also they wanted to admit her right them. I was devastated to say the least. I asked to have a minute so I could call Doug at work. Whitney stayed with Adelaine and I went outside. I had asked if we could just bring her back in the morning to get blood and do the procedure. Doug thought that was the best option. Two weeks ago when we were in the hospital Adelaine never settled in she was miserable and said repeatedly, “I just want to go home”.
When Adelaine was first diagnosed, all I could think to myself was how I wished I could take her home and have one more night with her without knowing what was. I wanted to hold her in my arms and feel her warm body beside mine and watch her chest move up and down as she slept peacefully beside me…
I knew that this may be the opportunity that I had so longed for last time. They agreed to let me take her home and bring her back the next morning. I’ll never forget how I felt when I was leaving there that day. I walked up to the nurses’ station where they all were, to tell them our decision. My core being was shaken, but I somehow got the words out. Here’s what bothered me and bothers me still today. There was no sign of empathy or compassion from them. We have been going there for almost 2 years now and I got nothing. Not one word of encouragement or support. I understand that it is what it is, but not one word of support? They literally glared coldly at me, as tears ran down my face. These people who are supposedly responsible for saving my daughter’s life had literally nothing to say to me. How was I going to place my unconscious daughter into the P.A.’s hands when she showed no love or mercy whatsoever to perform a procedure that could leave her paralyzed, or worse? It’s safe to say that how I was treated at the clinic that day was equally as disturbing as the news we were given. When Doug got home I told him how I felt and that I just could never go back to that clinic again.
The next morning I called the clinic in north Tampa to see if they could see us. Anissa and Kat go there and love it. In fact, we’ve always heard wonderful things about it. Last year, I would often come home from the clinic crying because of how they’ve treated us. I wanted to change clinics even back then. I wouldn’t be changing doctors, I would just drive to Tampa for her visits. She would still go to All Children’s for her in-house treatments. Doug encouraged me to set up a meeting with her doctor and try to work it out. That worked for a while but more and more kept happening. Finally I just put all emotions and feelings aside and would just take her anyway. Well guess what? No more. I just can’t do it anymore. I’ve had enough.
The north Tampa clinic is about an hour’s drive away, verses the Saint Pete clinic which is about a five minute drive. Even still I will gladly make the drive if it means no more St. Pete clinic! Unfortunately, that clinic wouldn’t be able to see us until the next day, which was fine with me, but Doug said her just couldn’t wait. He just had to know. So that morning, Doug went with me and I put him in charge. I had emotionally checked out of that place and was just there to be with Adelaine and help her through!
Tuesday was a very long, miserable day for us. Mason went on a 12 hour field trip to Animal Kingdom with his Gifted class, so at least he was taken care of! Bowen stayed home because he wasn’t feeling well. Whitney kept him during the morning and later they joined us at the hospital. Adelaine had a three hour blood infusion. By about 4pm they were finally ready to do the bone marrow aspiration. Besides the fact that she wasn’t feeling well and did not like being there, SHE WAS STARVING!!!!! She was not allowed to eat anything until after the procedure. The worst part of her day was being so hungry. She had already started the steroids, so that didn’t help matters.
The P.A. did the procedure and assured us that they would call my cell phone with the preliminary results by the end of the day. At that time is was already 4:15, which the end of the day for them is 5:00. While Doug waited over at the clinic, just to make sure we did find something out that day, I went in to see Adelaine in the recovery room. Because Doug had not met the anesthesiologist he felt the need to go over the risks that were involved in putting her to sleep, which consisted of organ failure, brain damage or death. As Adelaine laid there sleeping peacefully in recovery with Pepper, I asked if she had brain damage if we’d already know. Pepper assured me that everything went well.
Next the phone rang, it was the clinic. “Adelaine’s bone marrow looks very clear, there is no sign of relapse, and everything looks great”. They sent the rest off to be tested. We were very relieved, Adelaine gobbled down the food (cheese pizza, French fries, blue jello, popsicle and ice) that we had waiting for her. Whitney was of course thrilled along with us and we all said our goodbye’s and went home.
We are very joyful that Adelaine did not relapse. It would have been a worse nightmare than before, without a doubt. We felt very traumatized from the whole experience. On Monday we first found out that relapse was in question. Tuesday night we found out that they were wrong. It took two days after that before I could begin to snap out or the shock. I hope that we will never have to go through that again. On Tuesday Adelaine’s counts had dropped even lower, to 0.4. Even though her blood levels are very off, she was jumping around that night. Doug and I joked that whoever’s blood she got must have had ADHD!!!! She had a lot of her energy back!
Thursday night I left for my vacation with Katherine. I thought about not going or taking Adelaine with me. Doug was looking forward to having the children all to himself and Adelaine did seem to be feeling alright. Plus, Doug was planning to take her to an appointment on Friday to see how her counts were. I was a little disheartened when he called me with the results. Her white blood cells are at 1.0, they did go up, but barely. Her red blood cells are great at 12.3, but that’s to be expected since she just got a transfusion. Her platelets are still low at 121. Normal range is from 150-450. They did test her for two intestinal viruses, but she’s had no symptoms so I feel certain that they will come back negative. Because she has not relapsed, it’s safe to say that she has gotten a virus that has settled in her blood. How dangerous is that? I honestly don’t know. The doctor didn’t even look at Adelaine when Doug brought her back in on Friday, just the P.A. Doug said she spent about 10 seconds with them. Am I impressed with that? Not so much. Am I ever planning to go back there again? No. Am I angry? You bet. What’s the plan from here?…
Doug will be taking Adelaine to all her clinical visits here in St, Pete. He has agreed to make the appointments and take her to them. I have completely emotionally and physically checked out of that place, and to return will cause me more emotional trauma which I do not wish to put on myself. I am thankful that my husband, my partner has stepped in and is helping with this. If it doesn’t work out then we will be driving an extra 2+ hours for a three minute finger poke to test her blood levels. I believe with all that is in me that it would be worth the drive not to go back to her usual clinic. This entire ordeal is stressful enough without them adding to it!
PS When we took Adelaine over to Short Stay at the hospital to have her put to sleep and perform the bone marrow aspiration, everyone was very kind and supportive. We had nurses come to us and lend their support. When the ordeal was over we had a few come up to us crying, while they hugged and rejoiced with us. It felt really good to have their support.
Thank you all who loved on us and prayed for us!