January 24th 2014
Theres so much that runs through our heads when we see our little girl go through her third round of Chemo. She has been nothing more than a inspiration and a trooper. Harleigh has shown us how much she can take and will be able to. She just finished her third round of Chemo and still has that beautiful smile on her face. Its so nice to know that the nurses do really care for her. When we aren't there they have a companion for her, a PCNA nurse will sit with her all the time. Its so nice to know that she is getting the treatment she needs but also loves the people that take care of her. She is such a trooper that everyone just falls in love with her. Doctors and nurses all tell us how wonderful she looks even being in her third round of Chemo. This is what makes us fall more in love with the little girl who has become not only a inspiration but also a strong willed little girl.
Its January 23rd, 2014 and in Cleveland it is a snowy day. My husband and I woke up and took a look outside and were surprised on the snow fall. We got up and got dressed for the day and made our trip up to the Cleveland Clinic Children's hospital. Harleigh has made some of the nurses fall in love with her. With the bright big smile on her face who couldn't fall in love with this little girl. She has had a smile on her face even through all the changes that have happened. We are starting our third round of Chemo today and soon enough this will get us one step closer to bringing her home.
We were told that because she regressed at the Shaker Rehabilitation center that they feel like she would progress better at home. My husband and I were excited to hear that news. We are in process of preparing to bring her home and counting down the days. As long as everything goes according to plan she will be discharged on Sunday!! She is receiving the same medication as her second round which was Vincristine and Methotrexate.
Its going to be a great day!
Its been a tough road for our family since November 22nd, 2013. Before all this started, we had a fun, goofy, lovable little girl who brightens up someones day when they are feeling down. Now we have a little baby girl who is sick. She was diagnosed with a brain tumor on a Friday in November. We though it was going to be a normal check up for a ear infection and then be sent home. However the results were negative. We were sent to get a CAT scan done at a nearby hospital. Once we got to the nearby hospital and got the CAT scan done, we found out the news that would change our lives. The doctor asked a nurse to take Harleigh out of the room and she says, I am so sorry to tell you but it seems like your daughter has a mass in her brain. Right there my heart sank and I started to make phone calls. We were transferred to a hospital in Cleveland called the Cleveland Clinic Children's Hospital.
Upon arriving at the Cleveland Clinic, there was a team ready to go for observation and to start making a plan. The nurses watched over this little girl for us and soon enough they did a MRI to see the tumor more in depth and to find the exact placement. We were able to see the results. The doctor said that this tumor is right in the middle of her brain, blocking two ventricles that hold fluid. That Monday, we received a phone call telling us that Harleigh is really sleepy and the doctors decided to do the biopsy that day. By the time we got there, she was already down in the OR. They sent off the biopsy and a week later we found out that its a tumor called a Astrocytoma tumor. We were told that it seems to be a slow growing tumor and it looks to be either a grade 1 or grade 2 tumor. Soon after we schedule a surgery date to remove the rest to fully understand the tumor and to finalize the next steps we would have to take.
On December 6th, 2013 was the big day, Surgery day! Harleigh went in to surgery at 8 in the morning. One of us was able to go into the operating room until she fell asleep just for comfort. All I could keep running through my head was she wants a peanut butter sandwich when she wakes up. From the time she went in, all we kept thinking was this was the big day to remove this tumor and she would be able to come home and live a healthy happy life again. Took 10 hours in the waiting room, waiting patiently to hear our names called up to speak to the doctor on how everything went. These 10 hours seem to have taken a life time. At 6 in the evening we finally heard our names called to come sit in a room for the doctor to talk to us. The Neurosurgeon who did the procedure was telling us that it was a great surgery and everything went well. Then she paused and said "however I think its a higher grade than what we originally thought and she needed a blood transfusion." Mike and I looked at each other with that worried face and all we could see was more bad news. The surgeon was telling us that if she is right then Harleigh would need some Chemo to kill the tumor. After we were done talking to the Neurosurgeon, we headed upstairs to go see Harleigh. We were excited that she was out and everything seemed to have gone well, but with all the tubes and bandages, made us feel helpless. Soon after we arrived upstairs there is another doctor who stopped in that is working on Harleigh's case and asked how we are doing. Of course, our response was alright but still nervous for her. The doctor was really puzzled and told us that we should be excited and be out celebrating for this success. He was right we should of been excited but just looking at our helpless little girl just tore us apart. After we were done talking to one of the doctors, Mike and I decided to head home and get some dinner. While we were enjoying our dinner, we received a phone call from one of the pediatric doctors that was on telling us that Harleigh seemed to have a seizure. They put her on some anti seizure medication and that seemed to help control any more problems through the night. Next day we came in and saw her for a while and I noticed that her right side seemed to be very weak. I asked the nurse that was on if this was normal, she said yes only because of how intense the surgery was. On December 10th, I went to work at night and was giving updated to my management team of whats been going on. Soon after Mike had texted me regarding Harleigh. Her right eye seemed to have went more inward and her right side seemed to be more weak. They took her down to get a MRI done and they had told Mike that Harleigh had a stroke. I looked at one of my managers and told him that I had to leave, Harleigh had a stroke. He looked at me and his face was in pure shock and told me to just go.
When I arrived at the Cleveland Clinic she was still in the MRI. Mike was in the lobby and was pretty shooken up. My dad also was there but he waited in the lobby on the forth floor. I just hugged my husband and told him to try and relax, she is in good hands. Soon after I arrived we went downstairs to where the MRI was being done at and we sat there until it was finished. Harleigh seemed to be still sleeping but she knew we were both there for her. We headed back up to her room and my dad mentioned that he was going to get going because she wasn't going to wake up. He said his goodbyes to us and left. Harleigh decided to wake up as soon as my dad left and we spent the rest of the night spending time together. I tried to do some physical therapy with her to try and get a head start on strengthening her right side. after working with her a few times and moving some of those muscles, she was able to push her foot into my hand. We felt accomplished and thrilled that we are making small steps for recovery.
On Wednesday Decemeber 11th, I was sitting there with Harleigh and one of the doctors came in to talk with me. Mike was at work at the time. The doctor told me that they had the results from the biopsy. The look on her face and the tone of her voice set the tone for the rest of the conversation. She starts talking to be telling me that the tumor is called a Glioblastoma tumor, which is part of the Astrocytoma family. She then paused for a few and then told me its worse then what they originally thought. She tells me that the tumor is a Grade 4 and that Harleigh will need to go through Chemo for treatment. My heart literally sank and all I could feel was pain and sadness. I asked when will they start and their response was as soon as she is healthy, which includes having the EVD taken out. She will get two medication treatments per visit. These treatments are inpatient and she will be monitored to make sure she stays alright. They will place a plastic vein with a bubble right under her skin to inject the medication. While not in the hospital getting the treatment, Harleigh will be in rehab to get her strength back. It usually takes 6 months or more to be mostly recovered.
Harleigh is now started her Chemotherapy treatment. She will go through 3 sessions, each session is a 10 week session. We are just in the beginning. We are on round 2 of the first session. Its tough knowing that your child is going through all this and for a parent watching its rough.