Taya’s sickness started shortly after we came home from Cuba, March 8, 2009. She started to complain of headaches all the time. She would wake up in the night with a headache almost every night. She looked really pale all the time. Then I would receive a call from the school every day she went. She said that she had a headache and I would pick her up. She would come home and sleep it off and would feel a little better. Then on the day of her school trip which she was so excited about, April 2, 2009, she woke up and sat in my room waiting for me to finish getting ready. She said that the television was moving and she was crying. I immediately started crying and was in fear. I called the doctor and had her seen. I was really worried by that point. I knew, and a mother always knows, that something serious was going on. I took her that day and they swabbed her throat. Told me it was just probably a bug and she had probably just got out of bed too quickly and was dizzy. So she had missed her school trip. Over the next few days, I would get the same call from school saying she complained of a headache and I would pick her up from school like usual. She would come home and sleep and wake up looking and feeling a little better. Then the vomiting started. She was vomiting a lot so I called the doctor to check on the throat swab results and they had confirmed that it had come back positive for Strep. The doctor put her on antibiotics and she started on them right away. In my heart, I could not believe that it was Strep. There was no fever just a feeling of not feeling well, headaches, and now the vomiting. What did I know? The vomiting persisted and only got worse so I called my doctor and she sent us to St. Joseph’s Hospital for a Pediatrician to look at her and this way tests could be done if needed. Ov came home from work immediately and off we went. The doctor down there did blood work, put an IV in, and did a neurologic exam on her. They gave her Tylenol and watched her closely for a few hours. To our surprise, she started to perk up. She was singing and eating, and had not vomited in hours. They sent us home saying that the antibiotics had to be increased and that it was probably just the Strep and that it might take a bit longer for them to work. I felt better. If the hospital was sending us home then they must be right. Two days later, she was back to vomiting and even worse then ever. The headaches were really bothering her. Back to St. Joseph’s Hospital we went. They gave her Ondansetron which is like Gravol but does not have the sedating effects. Not a half an hour later, I was scared. Her breathing was weird. She seemed to have lapses where she would not breath properly. I mentioned it to the doctor but he assured me that she looked fine. I just chalked it up to the medication. Taya once again started to feel better after given the dose of Tylenol and her urine test came back showing she could have a possible bladder infection. They gave us new medication and assured us that she was singing and fine and that the medications just had to run their course and she would be fine. Sent home again. That night she slept in our bed with us. I was worried about her breathing. A mother knows. We watched her so carefully through the night and she just would not settle to sleep very easy.
It was Easter Sunday, and we were going to cook a turkey. Taya was dying for her grandmothers stuffing. That is the day our lives changed forever. She seemed to be doing better. She was still vomiting but not as much. She was playing with her brother and colouring which she had not done in weeks. We were finally feeling a little relieved. Dinner was ready and I decided to feed her a little bit at a time so as to not upset her stomach. She ate a little bit but not much and then started to complain of the headache again. All of a sudden, her head tilted back and her eyes rolled to the back of her head. Ov rushed over to pick her up and I immediately ran to the phone and dialed 911. It seemed like forever for the ambulance to get here. I was crying so hard. I have never been so scared in my life. Tristan was obviously scared and crying which my mom sat with him to try to keep him calm. Once the seizure seemed to be over, she started vomiting again. Ov kept telling her to hang in there. She looked really tired and wanted to sleep. Finally the ambulance showed up and they told me to pack a bag and that she was going to McMaster and to bring her medications with me. I packed the bag so quick and I drove in the ambulance with her. Ov and Tristan followed behind us. She slept the whole way down in the ambulance. I was shaking and pale and scared like I have never been before.
I remember the fear of having to be at the hospital for days. I wanted to do everything to figure out what was wrong with Taya but I was upset about leaving Tristan. He has never been so scared in his life and I hated that I could not make him feel better. The worst part to the seizure is standing right in front of your daughter and her asking for her mommy. She did not even recognize me. I can’t even comfort my daughter because she did not know who I was. She proceeded to have another seizure which was not the typical kind of shaking, eyes at the back of your head, etc., but the one where she is just not responding and staring into space. So off to CT scan we went. Ov stayed in the room with her. He was a wreck but held it together. Me, on the other hand, I could not stop crying. When we were brought back to the room in the emergency department, she kept having these breathing lapses again. Those were scary. The Pediatric Critical Care Unit (PCCU) doctor came down and decided it would be better if she was monitored up in their unit, and so up we went. I will never forget that night. We did not sleep. We had to keep taking her finger out of her mouth (for those who don’t know her that well, she was a finger sucker) as to get her to wake up and take a breathe. We made it through the night with no sleep, crying a whole lot, and scared like we have never been before.
Through the next few days, which each day seemed worse then the last, Taya had a drain (IVP – intraventricular device) put in her head as to release the pressure on her brain, a lumbar puncture to check for Meningitis, bone biopsy, many CT scans, MRIs, sedation, intubation, blood work, a million antibiotics, and steroids. All the viral cultures were slowly coming back negative ad so were the bacterial cultures. The bone biopsy was negative and the lumbar puncture showed some abnormal “suspicious” cells. Slowly, the differential diagnosis of CANCER was creeping up on the list of possible diagnoses. Then the worst day had come when the neurosurgeon, PCCU doctor, oncologist, and our nurse came in. They wanted to do a brain biopsy on our baby to hopefully finally figure out what was going on. While the doctor was doing the biopsy, he thought that he should also do a craniotomy or bone flap (taking out a piece of bone out of her neck/top of spine) to give her brain more room while they were trying to figure out what was going on with her. I just cried and cried. I could not believe that this was happening. Ov was so shocked, he just kept holding onto the viral diagnosis. “It is, what it is,” is what I told him. We had to do this to find out what was invading our little girls body. Surgery was booked for the next morning. Sleep… we thought we couldn’t, but I found it easy to just escape out of this world right now. This could not be happening. CANCER MY ASS!!!! I really thought that these doctors were a bunch of morons. The next morning came and started early at 6:30am. My stomach was in knots. She was having an MRI first with sedation and then was going in for the surgery. We kissed our little girl and Ov told her when he said to wake up, she needed to open her eyes and listen to him. She agreed. The surgery was the longest hours of our lives, six to be exact. My brother, Corey, had flown into support us which was good as it took my eyes off the clock. At 4:30pm, we sent everyone home thinking the waiting would end, but the nurse in the operating room came out and said it would be another hour. Finally, an hour later, the neurosurgeon came out and told us it was over and that she did good. He went over everything with us that he did and said that they sent off this “coating layer with the abnormal cells” for testing. We would have to wait now for five to seven days for the results to come back. He sent us upstairs to see our daughter. By the time we got up there, she was already coming out of the sedation. Wow. We got through one more hurdle. Now for her pain. We were warned that she would be in some good pain for four days or so. She proved them wrong. Two days later, she was eating everything in sight. Eat, drink, eat, and drink, that is what she did. Everyday that passed was another day closer to finding out what was doing this to her. You want that day to come, but you are afraid for the answers. For the next few days, we had moved rooms. We were in the back which they called step down which meant that you were not critical. Taya had her drain removed and all IV’s taken out. The news had to be good. She was doing so well. This nightmare was going to be over soon and we will have our daughter healthy and safe, and we can all go home and put this behind us.
April 23, 2009, changed our lives forever. The neurooncologist walked into the room and asked if she could speak with us in the family room (this room is not the room you want to be in, in fact, they should call it the hell room, the my life is over room, the feared room). Ov was in the bathroom so I asked if we could wait until he got back. I remember my heart pounding out of my chest and my stomach was turning. I felt ill. This was not good news. Ov came back and I said, “it’s not good. It’s not good. The cancer doctor wants to talk to us!” He held my hand and we walked to THE ROOM. We told Taya we would be right back. I saw our nurse grab Kleenex boxes and put a sign on the door saying IN USE DO NOT DISTURB. That whole meeting was a blurr to me. I heard words like brain, spine, cancer, and aggressive. I just cried. I cried so hard. I could not ask questions. I could not believe this. Ov asked some questions but to this day, I could not tell you what they were. I hated that doctor. I still hate that doctor. Right now, she was the enemy. After the meeting, Ov stayed with Taya. I went downstairs to cry. I called my mom. How would I tell her? It just came out, “Taya has Brain Cancer!” There was silence. What could she say. I don’t remember much of that conversation nor that day. It was just a lot of emotions. I did not call anyone that day or night and just stayed where I felt safe, in my husbands arms. How was I going to explain this to Tristan? How was I going to explain this to Taya? Life as we knew it, was gone! Rock bottom is where we were. We were then moved to 3B (the oncology ward). We had a private room and were told that because she was stable that we could have a night pass to go home. I guess this is what everyone meant about getting excited for the little things. I called Tristan to tell him the good news. We packed up, took the medications, and went home. She really seemed excited. We had to explain to her and to Tristan that we could go home but we would have to go back in the morning, and that Taya was sick and it was going to take a while to get her better. This meant, back and forth to the hospital. We had a nice night at home. Taya slept lots and did her typical up until 4:00am wanting food and drinks. She awoke in the morning with a headache and vomited. We came back to the hospital. They checked her vitals, gave us more medications, and sent us back home for another night. The day went well but come 4:00pm, she fell asleep and did not wake up until the morning. She was throwing up and complaining of a headache again. She actually asked us to take her back to the hospital and so we went back. They took blood, put in an IV, and watched her carefully. She slept all day and did not wake up for much. We were moved back into a private room closer to the front. The PCCU was called to come and see her as the oncology ward was concerned and worried that she was going downhill. Just then, she woke up wanting timbits. She ate and ate, and ate. Relief. The night went well. She was not allowed to eat or drink because they wanted her to have an MRI in the morning to see if anything had changed.
This is when my journal began. I felt the need to write this as one day Taya would want to know all about it. I did not want to forget anything. There were days when I wanted to write and days that I could not even think about writing.
April 29, 2009 (Wednesday)
Well we went home to shower today. Mom came to sit with Taya. She pretty well has slept all day. She is not really opening her eyes much. You can just see that she is going downhill. The second opinion of the pathology has not come in yet. The oncologist came in and told us that we really can’t wait on that for treatment so Juravinski Cancer Clinic (JCC) tomorrow for her casting plus maybe her first treatment. MRI and PICC line (peripherally inserted central catheters almost like a permanent IV through treatment) will be done in the afternoon. It is a very big day tomorrow for Taya, but weirdly enough, I was not sad but excited (bad word). I cannot sit here and watch my daughter deteriorate and do nothing. I miss her smile, her singing, and just her voice. Sure I am nervous and anxious, but the only way we are going to get her one step closer to getting her better is by starting treatment. Tristan and grandma are on there way down to visit. I can’t wait to see my little man whom I know is very concerned about his sister. The day will soon come when I have to use the word CANCER with him instead of just sick. That thought is scary. Unfortunately, I cannot protect either of my children from this. That makes me sad. The PCCU team was in and told us that her potassium is low so they are going to give her 3% solution and they think this may perk her up a bit as well. All I can do is just sit and wait. Patience seems to be key lately. I have shocked myself at how good I am getting at it. I look out the window and see a whole world out there that used to exist with us but I think that our lives are now much different now. We are in a world of sick kids, nurses, doctors, radiation, chemo, etc. I know that this world existed. I watched the shows. Funny enough, Taya and I used to watch Life’s Little Miracles together but I have never been forced to see it and all the families that live it. It is a sad world and one that I wish I could go back and just watch on television.
May 2, 2009
Wow. What a rollercoaster ride. I have not had any time to write. We were sent two days ago to the JCC. She was molded for her face and hip area to get ready for radiation. Come back to the hospital to go for an MRI. Once down there, we were told she needed another lumbar puncture and a feeding tube put down her nose after the MRI. The second opinion was confirmed today and read by Sick Kids as Medulloblastoma. I guess I have accepted it now because I was not upset. I was ready for my baby to start treatment. She was going downhill fast and had been sleeping for days. I was yelling at staff and doctors that there was going to be no Taya to treat if we did not get moving on things. Sure enough, that afternoon, the MRI confirmed progression of the disease. It was starting to invade her brain stem. I cried so hard even though I knew it. I heard the doctors say stuff like, “we have to start treatment tomorrow. Thank god she had the craniotomy or she would have been dead. Quality of life to be discussed if her brain swelled to much.” I thought at that moment that I was going to lose my daughter. They still had her intubated and planned leaving her that way until she was stable. The radiation will cause swelling of the brain so they had a plan to pre-treat the swelling before radiation. We were told it was going to be a rough weekend and IF she made it, we would start chemo on Monday. The only way to get her better is with treatment. I cried all evening. I had so many bad and horrible thoughts. Now, the diagnosis did not matter. Cancer, Smancer! I just wanted my daughter to be given the chance to fight this, but now god, wasn’t even going to give her that. What the heck happened here? Was god punishing me for questioning him? Punish me then and not her. She is so sweet and innocent, and just a little girl. I could not go on without her. I planned her. I loved her. I carried her. I birthed her, and she was mine, not his. The day went on with a lot of crying and anger. How was I going to get through the weekend? What if she did not make it? What is she thinking while she is intubated? Does she know I am here? Is she scared? What a question, of course she is scared. By the end of that night, I realized that I had no choice but to put all my heart into god and hope that he would make this right. My heart ached and my stomach turned. I felt ill again…not sick but just ill. Our nurse made us get some sleep that night and told us that we would need our strength to get through the next couple of days. So we went to the room (a room for parents just down the hall. It is given to the most critical child’s parents in the PCCU) and we slept for a few hours. We were told she would be fine and they would call our cell phone if there were any problems. You feel so guilty but you know the nurse is right. What good are you to your child if you get sick and can’t be there. They really need to have beds in the rooms of the PCCU. You are not suppose to sleep in there because if anything critical happens they need you out of the way so they can help your child. We went to see her in the morning. We just sat and stared at her. We were not allowed to touch her, hold her, talk to her as stimulation could affect the pressure in her head. We decided to go home and shower. On our way back to the hospital from showering, the cell phone rang. Your heart stops. Ov answered it. We were just pulling into the parking garage. It was the neurosurgeon requesting permission to put in another drain and a monitor in her head. Blah, blah, blah. It would help give her more room and keep the pressures in her head normalized and this monitor would allow them to keep an eye on her pressures. No doubt, no crying, I said, “go ahead.” She had the drain put in at noon and then went to the JCC for her first treatment. Both went well. No issues. I am feeling a little better. Two more hurdles done. The night went good as well and we went to the room again for some sleep. We woke up in the morning. The nurse said that she had a good night. Throughout the morning, her pressures were close to the 20 mark (normal pressure under 15). This was a little bothersome, but the PCCU doctor assured us all was okay. Thank god Sandra was her nurse for the day. She has always been wonderful with Taya and with us. She is a really smart nurse. She noticed that Taya was getting red around the mouth. She quickly gave Benadryl. Thank god. Not even five minutes later, her whole face was swollen and red. She was having an allergic reaction to the Vancomycin. Great!! Treatment (radiation) was in an hour. We had to get the swelling down so her mask would fit. She went to treatment and all went okay thank god. She is very sedated and looks very comfortable. I am at her bedside staring at her. She is gorgeous. I love her more then words can say. I have so much I want to tell her. I whisper to her to hold on and keep fighting and that mommy and daddy are trying to get her better. We have done nothing to get her better. The doctors are trying and so are the nurses. All that we have done is be here and allow these doctors and nurses to do all this horrible stuff to her. It is for a great purpose. I just wished she would understand that.
May 3, 2009
What a long day. We went to the room again last night. We were awoken to the phone ringing at five in the morning. Your heart starts beating fast and your stomach turns. I passed the phone to Ov. I am not good with bad news. To our surprise, it was our nurse Jana just wanting to let us know she awoke and that Taya gave her a neurologic assessment. We went back to sleep. My sleep was much more peaceful for the next two hours. Wow. My daughter woke up and gave a good assessment. That is wonderful. Great news. She is still in there. When the alarm went off, I did not want to wake up. Not because I did not want to see my daughter but because sleep is so easy and you can just escape from this situation. We got up, went to the bathroom, and went down to get a coffee. We were ready to see her. You feel very anxious, excited, and nervous. We walked in her room to see her tongue so swollen. It was so big and hanging out of her mouth. The residents were in the room discussing her eye movements. Her eyes were moving from side to side. Crap! What next. The doctors assured us that her tongue swelling was either from radiation or the fact that she was intubated. Her eye movement was from the medications she was on and just meant that she was heavily sedated. We should not worry we were told. She was doing good. We went off to the JCC. She did well again. Came back and her tongue was more swollen. Ov was having an anxious day. Everything was bugging him. I called mom to bring Tristan down. We played an hour of cards, had a nice visit, and home he went. This was not the life I had dreamed of. I came back to the room and her tongue was even bigger plus she has a lump of stool in her belly. Poor thing. More blood work, diaper changes, moving, poking, etc. She had a fever as well. Tylenol was given and a cold cloth placed on her head. It has been a long day. Today, was the big day for swelling so hopefully we will just have to get through the night and things will get better. Probably not, but one can hope. It always seems like two steps forward and five back. I can’t even look at her much today. The tongue thing really bugs me. If I look to long, I will cry and I need to be strong. Ov is not strong enough today to help me out so I must be the strong one today. We have been in this hospital for three weeks today. I can’t remember what the normal outside world feels like. This is our life now. I miss seeing Taya be a normal four-year old little girl with normal four-year old issues. Riding her bike, scrapes on her knees, making a mess in her room, dancing, singing, and playing with her brother. Instead, she has been lying in a bed for three weeks, heavily sedated, intubated, and fighting for her life. What is wrong with this picture?
May 4, 2009
Last night went well. We got about six hours of sleep again. I noticed right away when I saw Taya that her tongue looked a bit better, not much but a little. The neurosurgeon came in and said that she is looking good and is stable which is great considering she is at prime swelling time. JCC appointment is at 2:15 today. The plan is to keep her intubated and assess tomorrow. We are still waiting on the neurooncologist to come and discuss her treatment plan. Chemo may start today. The nurse just gave her some Morphine, which I was happy with. Her heart rate was higher and she just seemed unsettled. I hate wondering if she is uncomfortable, sad, pissed off, or in pain. At least with the Morphine, I hope that she is having pretty princess dreams. A mother can only hope. She is getting physiotherapy right now. Heather, the physiotherapist, is really good with her but I don’t think Taya likes her. She is exactly like her parents, just wants to be left alone. I am tired today. I feel like I could sleep for a week. Ov has been the wake up nazi, 7:00am sharp and forces me up. I just wish I could cuddle up to Taya and sleep all day with her. I am really missing her voice today. I would do anything just to hear it. She also got a foot brace today. Her muscles are so weak and stiff. No one has seen her in days other then Ov and I. I can’t wait to call mom and Tristan to come see her. Of course, not until the tube is out. I am still praying every day. I am hoping someone is listening. I think so.
Monday today. The start to a new week. I am hoping for a good week with good things to come. Optimism is key, but not too positive because the drop is hard, real hard. Well we are back from JCC. Her fourth radiation treatment. Things went well again. It only took about an hour and a half this time. Her tongue is still a little swollen but not as red. She has some blood in her CSF (cerebrospinal fluid – the fluid we all have in our brain). The neurosurgeon said as long as her vitals are fine, we should not worry. She looks pretty comfortable right now. Her eyes are a little puffy. I am feeling pretty good about things. We got our treatment plan today. One whole year worth! It does not matter though, whatever it takes to get her better. I don’t know if we will have the room key tonight. It sucks. Last thing we should have to worry about is where we are going to sleep. If need be, a chair in her room in the corner.
May 5, 2009
Today, started with a phone call at 1:30am. They found some fluid on her pillow (CSF?) and her heart rate had continued to spike. I did not sleep after that call. OPT (outpatient transfer – like an ambulance) was there to pick her up and take her to the JCC. So off we went to radiation. I was a wreck at the JCC. I listened to patients talk to each other and tell their stories. They all new exactly what treatment number they were on, and compared their side effects of the radiation. I kept thinking that my four-year old baby girl is going to have those side effects but that at least these patients were older between 40-70 years old. Taya should not be there. Then I felt bad for thinking that. It does not matter how old you are, it is not fair and all patients need to share their story. We left the JCC and were told that Taya was going straight to CT scan so we came back and had lunch in the cafeteria. I was exhausted so I went to the special room to sleep and Ov stayed with Taya. The less sleep you get, the more emotional you are is what I have been noticing. Ov came to wake me up and we gave Taya a kiss and went home to shower and spend some time with Tristan. I forgot to mention rounds in the morning, and that they decided to forget about worrying about neurologic assessments and to put her in a medicine induced come-like state to keep her comfortable. Extubating is not going to happen any time soon. She had her MRI while we were home and now we are back sitting at her bedside. She is having a problem with her oxygen level but nothing worrisome so they tell me. Tomorrow, we are expected to go to the JCC by EMS because this is safer in regards to her airway. She had her first dose of chemo about a half hour ago so she is well on her way. It is going to be a long road but we will get there. We have to.
May 6, 2009
Well no eventful calls last night. We woke up and did our usual. Come to her room. They were preparing her for the JCC. We went by EMS again today as per her saturation issues the day before. The treatment was uneventful as usual. We came back to the hospital and they did rounds on her. They are going to give her more drugs to keep her completely sedated. She has to stay completely calm. Any sort of rise in her vitals could be deadly. The PCCU doctor asked to have a meeting with us at 3:30. I knew what it was about. They wanted to have THE TALK. Sure enough, I was right. They will do everything they can but something may happen and they may not be able to bring her back. From day one in here, we always new that there was a chance of losing her. I refuse to believe that. I have to fight for my daughter and believe in her strength. She can’t give up. She won’t give up. I know it. This is just a hard journey we have to go through. No where in this equation is life without her. NO WHERE! I feel it. She has always been feisty and now she has been put to the ultimate test. Everyday of radiation and chemo gets her one step closer to her getting better. “Hold on,” that is all I keep telling her. Every single time the nurse suctions her, she bites down. She gets really pissed off. She is in there. I know it. She is telling me to believe in her. I keep telling her that if someone comes to get her, to tell them to go away and that she wants to be with mommy, daddy, and Tristan. Her tongue is not too bad today but her face is a little swollen. It is really hard to look at her without breaking down. My stomach and heart are pretty calm today so I am hoping that god or my grandma is telling me not to worry. I pray that my mother’s day present will come in the form of good news. If I have to wait a few days to talk to her, I will but I am hoping for her to hang in there a little longer for the treatments to start working. I do a lot of praying these days. That is all I have. I don’t know if he is listening. I not only pray for Taya but I pray for all these kids and their families.
May 8, 2009
We made it to round eight of treatment. We are back and doing well. Before we left, Ov asked her if she was comfortable and she shook her head yes. She is supposed to be completely sedated but she is still fighting so hard to let us know she is still there. That makes for a wonderful start to the day. Now, she has the weekend off to rest and get better. Hopefully, the swelling will go down by Monday before she is back to treatment again. Just had rounds on her. They are going to keep her on the same regime over the next 24 hours. Maybe do a CT scan on Saturday or Sunday so they can assess if they can extubate soon. Great news. I can’t wait to hear her voice.
May 10, 2009 (Mothers Day)
What a tough day. My baby is still sedated and intubated. The last few Mothers Days flowed through my head and what this Mothers Day would have been like if life was normal. I would have slept in and my kids would have ran up to give me a kiss and a hug. Taya probably would have told me my gift a few days earlier. She could never keep anything a secret. Ov would have bought me and Taya one yellow rose each. She would have then stole mine and kept both in her room. Instead…I woke up, did the same hospital routine, and waited around for her CT scan. We got back from CT and I was happy/sad that the nurses had set up the bed so I could cuddle up with her. I fit right in the bed with her like two pieces of a puzzle. I just cried my eyes out for about a half hour. Ov cried right along with me. She was so calm with me beside her. All of her vitals were stable. I just wanted to stay there forever or until this whole mess was over. I should be comforting her through all of this, yet she made me feel so much better. How crazy is that? We drove home to shower and pretty well cried the whole way home. We had to get it together because we were going to be spending some time with Tristan. We showered and then we call came back to the hospital. We did not like to leave her alone even if she was completely unconscious. Ov, Tristan, and mom went across the street to pick up a pizza. I met them down in the cafeteria. We played some cards and sat up in the kids room while Ov and Tristan played video games. They left at about six o’clock and we settled up in Taya’s room. The trend seems to be that she starts to do some weird stuff before we go to bed ie. Breathing more on her own, heart rate climbs, and blood pressure goes up. You can’t help but wonder if she does it on purpose so we don’t go to sleep. By bedtime, I am always exhausted but I can’t seem to sleep well. I have bad dreams. I relive this nightmare. I wake up every fifteen minutes and I just never seem to be able to shut my brain off. I am happy that she is stable but I just want her stable in 3B with her tube out and just kicking the shit out of this cancer. You wish you could fast forward the days but only if it were good. Her tongue is still swollen even after a two day rest of radiation. Her eyes are puffy and so are her cheeks. Tomorrow, she goes to the JCC for round nine of radiation. My hopes for the week would be to get the tube out, sedation gone, and to hear my baby talk. Will that happen? Only god knows for sure.
May 11, 2009
Well JCC today. Treatment number nine. EMS picked her up. They were nice guys today and waited around to take us back. Taya was still on her stretcher at the JCC when I noticed her Boo Boo Bear was in her arms. I said, “Hey did you sneak Boo Boo Bear in for the ride?” She cracked a smile! Her tongue was swollen so I had to ask her, “did you just smile?” and she nodded yes. What a great way to start the day. Treatment was over and so we came back to the hospital. We ate and then headed upstairs. She had a great day and I fell asleep next to her bed in a chair. Tristan came down at about 4:00 and stayed until 6:00. He had a great time with Ov. He asked a few questions. I answered them the best I could. He wanted to know if we would be in here for a year and if we were going to miss Christmas? How sad. I have to worry about both my children. One is suffering through this directly but the other one is also suffering indirectly. I hope that soon we will be able to answer his questions and find a good family balance.
May 14, 2009
Nothing much new. She has been brewing a fever the last couple of days. They are trying to find out the source of the infection. Steroids are being decreased and she now has a leak in her airway so extubation getting closer hopefully. Today was day twelve of radiation. She is almost halfway through. Her tongue is getting better.
May 17, 2009 (Sunday)
Well here I sit by myself. Ov went home for a few hours to be with Tristan. I feel sad today. I don’t know why but I cannot stop crying as I sit by my baby’s bedside. She had a bath this morning and more hair came out then stayed in. Hair is so not a big deal to lose, but I think it really just reminds you the reality of all this. Her face is still a little puffy and she is still on the ventilator. Late next week or early the week after will be the next MRI. If there are signs that the swelling has gone down, they will think about extubation so another week of silence. What I would do to hear her speak, cry, or laugh. I have not heard it in weeks. I have not been much in the mood for writing lately which is odd because there is really nothing much else to do. Think, sleep, dream, and cry. It is hard to sleep. I have a lot of nightmares. I dream of her tube coming out and she can’t breath. I dream that I am her, and I can’t move or talk but I feel everything, and I wake up scared. I dream that she is cold and that I should go cover her. I dream about the seizure that started this whole mess. I just wish my brain would take a break. I have so many prayers and wishes. I pray every morning and every night before I go to bed. I hope he is listening. I guess only time will tell. I keep asking her to fight hard, to hang in there, and then we will fight this together when the tube is out. I will not give up on the fact that we will fight this hard, we will beat this, and this will be just another story or journey in our lives to talk about. I still have these moments throughout the day that I ask why this is happening to us? Why we have to go through this? I pray that we make it out of this! Sometimes you just wish you could fast forward (as I have said previously) and see the outcome, but again, only if it is good. We still have not told Tristan yet. We have been here five weeks today. I can’t tell him until she is no longer critical. I feel that day will come so I need to wait and protect him from this all. I know that he knows that something is wrong. He has not seen her in a while.
May 20, 2009
Day fifteen of treatment. She has had a rough day with high heart rates. Hoping she just needs to poop. I don’t feel like writing today.
May 24, 2009
What a long couple of days. Radiation treatment seventeen done. They stopped the chemo for now as her immune system is too low. Normal range should be between 4-7, and she is 0.1. They have started to wean her sedation and she is going through some serious withdrawal. It is not easy to watch. I don’t foresee sleep in my future. They want to extubate as soon as she is ready but she keeps failing and rides the ventilator. I don’t have a clue when the tube will come out. She has already been through so much and now this withdrawal. After we are over this hurdle, our next hurdle will be physiotherapy. Yeah, she will love that. We don’t have the room key tonight as another family needed it so we are stuck trying to get little naps in where we can. It is 12:20am. Ov is sleeping in the chair next to me. I had some breakdowns during the day. When they gave extra medication, she would settle and then I would cry so she would not know how bothered by all of this I am. Now the nurse wants me to leave her alone and not touch her to see if she can get through the withdrawal moments on her own. How shitty is that. I have had very little times that I could help her out in the last few weeks and now I have to just watch her go through this by herself as well. What if she is having a bad dream or having a paranoia dream that something is on fire or that Ov and I are not there? Everything about this just sucks!
May 25, 2009
Treatment eighteen is done. Had an okay day. They discontinued one of the medications all together so she is having some serious withdrawal symptoms. She has been very unsettled again today. Could be from radiation as well…who knows. Unfortunately, with her tube still in, no one knows for sure. She opened her eyes again today twice. She also broke out in a rash on her upper chest and back. Her face went bright red. Not much longer with the withdrawal though. Only have the Fentanyl left to wean and probably it will be cut in half tomorrow and then discontinued the next day. I am exhausted. I slept on the floor of her room last night. Trying to figure out where and when you are going to sleep, should be the last of my worries. I am so sick of the nurses telling us we should go home or take turns going home to sleep. Really, I could not imagine how I would sleep knowing how far I was from her. The next time someone says that, I think I will snap. If it was their child, would they do the same. Maybe they would. Being in here, you see how many parents are absent. I try not to judge but it makes me sick inside. How can you go to work and sleep away from your baby at times like these? Well I guess everyone is different, but we are not and will never be parents like that. I sleep better knowing Taya is comfortable and that we are right there. Well anyways, it is getting late. Got to start thinking about bed….on the floor.
May 26, 2009
Treatment nineteen finished. Taya made it twenty-four hours on CPAP. It is going to be discussed with all the PCCU doctors as to whether or not the tube should come out. She opened her eyes for a longer period this morning and just stared at me. She started to cry. I thought I would be excited when we hit this stage, but I just started crying myself. Every kid cries to their mom when they are in pain or scared. I can’t help her. I can’t do anything for her but hold her hand. I feel completely helpless. I just want to crawl into bed with her and hold her, and never let her go. Tristan called last night and said he loved her and wishes he were here with her. Oh god…..when will my heart stop aching. I can’t help her. I can’t help him. My whole outlook on parenting is falling apart right before me. I have never left them. I have never let them sleep anywhere else. I have tried so hard to be the best parent I can be, but now, I just feel like I am failing at everything.
I stopped writing after that day. Everything around us was falling apart. I could not keep writing the horrible days that we had to go through and the horrible days my kids had to go through.
The big meeting. The one every parent does not want to go to. The feared one, our families rock bottom. She had an MRI after radiation was done. Showed that the radiation did not work and that blood was still feeding the tumor. I heard one thing and one thing only…TAYA WILL DIE. They were going to extubate (take the tube out) and let her die. We left that meeting still thinking she would prove them wrong. These cells were dead and just waiting to wash away was our thoughts and until then she was just having swelling and that is why the MRI showed no changes.
June 19, 2009
The tube came out at 3:00 in the afternoon and Tristan had come down to see her without the tube. We had already talked to him and warned him that Taya was really sick, her diagnosis, and the grim and bleak outcome. He kept saying that she would prove all those doctors wrong. Anyways, she did fine when the tube first came out and was breathing fine with just a mask on with oxygen. We spent until about 8:00 with Tristan in Taya’s room and he went home. That night was the first night that I knew for certain that my daughter was going to die. She was struggling with her breathing and looked really unsettled. She slept most of the time but occasionally nodded to our questions. That day was hell to watch. I am not going to get into the details of that day. We had not called Tristan all day. We knew he could not see her like this struggling for air. We had to protect him knowing all to well that he would not see her again. We called him that night and just told him that he could not come down and that Taya was having a really bad day. That night we did not sleep. We stayed up all night wondering if this was going to be the night. Ov and I cried a lot that night wondering how we were going to go on without her. Shattered by what life had thrown our way. At 6:21, Taya was pronounced dead. She had taken her last breath and we were at her side. She came into this world with both of us waiting for her and she left this earth with both of us by her side.
That is Taya’s courageous battle with Medulloblastoma and the ten weeks she suffered through. Healthy one day, gone the next. Just like that. Her life was far to short and she proved her bravery every day in that hospital. She made Ov, Tristan, and I very proud, and we will never, ever, ever forget her.
