Abby's Cancer
Abby is now facing Diffuse Large B-cell Lymphoma (Cancer)
As if enough isn't enough, now Abby has cancer. I could spend time asking why or calculating the odds of one person having all these problems -- which has to be staggeringly low -- but I am left simply wondering how on earth so much can happen to someone so small and young.
You begin to wonder when it all started.
Abby before the Cancer
Abby getting IV iron at Cook Children's Hospital Kidney Center, Fort Worth
Abby getting IV iron at Children's Medical Center, Dallas
We were in the midst of doing IV iron and Aranesp (EPO) shots to combat Abby's anemia which has been hampering her since June 2008 when things began to go awry.
Abby at Dallas Children's Medical Center recovering from stomach flu.
Oddly, Abby has been in and out of the ER in the last 6-7 weeks. It all started with the stomach flu. It lasted an ungodly 9 days w/ intense gas pain that would mostly come at night. The screaming was unbearable. We went to the Pediatrician, the Urgent Care, and finally Dallas Children's Medical Center. Between them, they tested Abby's stool for everything and found nothing. They even did an ultrasound, which in hindsight showed no signs of swollen lymph nodes. They sent us home.
This was followed by a good week with no problems.
Then a high fever of 102 hit over the weekend. If you know Abby's medical history -- 102 is huge for Abby. I called the Kidney Center at Dallas and they told me to bring Abby in. However, I didn't trust the doctor during the night shift cause I felt he unjustly forced us into admission during Abby's stomach flu, but I brought her in anyway. I called the kidney center on the way in and asked why he felt Abby should be admitted and was told he would talk with us after we arrived. So I admitted Abby to Dallas Children's Med Ctr. When he didn't come and speak to us after 3 hours of waiting I signed us out. You shouldn't have to ask to speak to your doctor for three hours, watch him flirt with the nursing staff, and not bother to come down to your room to discuss why he has chosen to admit you. So we left.
I took Abby home and Bry & I watched her. She began to look really pale. I decided to take her to Cook Children's ER at 3am.
I like Cook Children's ER cause they won't admit you unless they have to.
They drew blood, and started Abby on IV antibiotics. They asked me about Abby's 6.7 hemoglobin. I told them she has been fighting anemia all summer and I was told she would need a transfusion if she hit the 6's. I inquired about using my blood -- the female doc said it would take 5 days -- so no choice -- give her the blood.
Abby getting a blood transfusion at Cook Children's Hospital, Fort Worth
Abby bounced back after the transfusion and they said Abby could go home. I was happy and told them I have some fecal cards that her Dallas Kidney Doc, Dr. Seikaly, wanted us to do as he was trying to determine why Abby was anemic and gave them to the ER doc. She came back and said there is blood in the stool and Abby would have to be admitted to determine why. This time I understood the reason for admission and relented. I called Bry to let him know. Abby and I stayed the night. And the next night and the next night.
Poor little A had a colonoscopy, endoscopy, and barium enema. All showed nothing. She was perfect. The Pediatric Gastroenterologist, Dr. Hunt, said there was a very small amount of blood in her stool so not to worry. We also met with a Pediatric Hematology/Oncology Doc, Dr. Eames, as well and at this time she wasn't worried about Abby's situation. I really didn't understand why a blood doctor was involved. Oddly, her field of specialty was a glimpse of things to come.
Then on the morning of our 4th day the blood culture test results came back and we were told by the Cook's Kidney Doc, Dr. Pena, that it was EBV. I was relieved and wanted to go home, but first we would have to meet the Pediatric Infectious Disease (PID) Doc, Dr. Mazade. I asked that he come early so we could go home. That visit seemed like a blur as I just wanted to go home. He said EBV was mono and would cause fevers and last 6 months to a year given Abby's situation. He said that Abby's anti-rejection drugs may have to be lowered to give her an opportunity to fight off EBV. That her EBV-PCR level was 400. Not terribly high but it would have to be watched to monitor her EBV-PCR level and that her Cook's Kidney Doc, Dr. Pena, would do that monitoring. Ok. Ok. I thanked him for coming early as I desperately wanted to take Abby home. After 4 1/2 days we got our wish.
At this point we decided to withdraw Abby from public school. She was just beat and had been falling asleep in her classes. To our surprise her teachers all felt this was for the best under the circumstances. They wished Abby well and asked to stay in contact.
So we got in a week of homeschooling. Abby napped a lot. We would get 2 subjects done and then she'd sleep. I thought Mono. Ok. Let her sleep. When she would wake we would do another two and so on. This was best for Abby.
Here is where things start to get fuzzy for me. As this next admission (starting on Oct 12th) is ongoing now as I write and I am still caught up in it.
Abby wanted to go see the movie City of Ember as she had started reading the book. So we got up early and thought let's go to Walgreens first. She wanted to check out the Webkins there. After milling around the store we got in the car and were going to head over to the show in Southlake. Then, Abby said her back hurts. I turned to look at her. She was uncomfortable. I thought she pulled a muscle in her back looking at toys. She complained some more. I said Abby, we can't go to the movies if your back hurts, cause sitting in those chairs will make it worse. I suggested we go home and perhaps hit the show on Sunday (11-12-08). Surprisingly she agreed. So we went home.
She complained some more. We put a heating pad on her and tried to get her to relax. It didn't work. We tried some Tylenol, then Ibuprofen. It didn't work. We tried to get her to sleep. Nothing worked. Abby said, "Mom I need to go in". This struck me as odd. Abby has never asked to go to the ER ever. Bry was grumpy since no one slept last night. I told him she needs to go to the ER. He seemed surprised. We all got dressed thinking this was just a simple muscle pull or spasm and it turned out to be much worse.
By the time we hit the ER Abby's pain was getting worse. The ER doc started her on Morphine to help with the pain, then he ordered an x-ray, followed by an ultrasound. They found a problem with her intestine. An intussusception. Normally kids younger than her get this and suffer from abdominal pain. Yet, Abby had severe back pain. She would need emergency surgery. A CT was ordered to get a better look -- which they did -- and they found the intestine was reversing itself so they thought they could hold off on the surgery (but if this happens to you insist on the surgery cause Abby spent another 12 hours in pain and they ended up doing the surgery anyway).
He also reported that they found enlarged lymph nodes. We were relieved by the news because after reading up on EBV we knew swollen lymph nodes were normal and would go away -- as one in her elbow had already swollen and gone away earlier.
So we were admitted to the hospital and this time no one wanted to go home as Abby's pain had hit a crescendo. She would grunt as well as whine. I have never heard her grunt like that before. More morphine was given and this eased her pain temporarily. She constantly wanted back rubs and tummy rubs. We rubbed and rubbed.
I assumed (I know don't say it) that the swollen lymph nodes were caused by the EBV. So I didn't worry about them. The ER folks made arrangements for Abby to get a room and soon we would be going up there. However, the ER doc wanted one more ultrasound. Curious as we just did one.
This was the longest ultrasound on record and the Radiologist actually came into the room as it was being performed. She directed the tech on what to look for. An hour went by. I became very concerned at this point cause in all my years I have never seen this precedent broken.
This must not be good if the Radiologist is in the room. I fought to keep myself under wraps and let them do their job. Finally, the radiologist turned and told me that the ER doc would talk to us and left the room. Well shit.
When we returned to the ER Abby needed more pain meds. The ER doc looked grim. Everyone was giving us "the look". That look that they give when they know you are in trouble and no one really wants to be the person to tell you. The ER doc talked about her lymph nodes and dropped the C-word. I ignored it. Doesn't he know she has EBV.
When we finally got to the room pain management became the major issue. The floor isn't as fast as the ER about handling pain. Eventually, Abby was put on a pain drip -- a variant of Morphine. We didn't feel it worked as well. But a clever nurse asked for Vallium and that seemed to nip it temporarily.
This is really foggy now... The lymph nodes became the primary issue -- I think we talked to several folks from Hematology/Oncology (I didn't realize that the Hemo guys were Oncology guys at the time). We talked to the Pediatric Infectious Disease (PID) Doc again -- a familiar face. He expressed that EBV can cause the swelling of Abby's lymph nodes. One or both of the specialists dropped the C-word (Cancer). I asked Dr. Mazade that we not say it (cancer) out loud cause we don't know and I am encourage that EBV was the culprit. We just lost grandma (my mom) from Cancer and it was all too much to wrap my head around. So I thought pushing the thought away would push the potential away, but it didn't. Abby became very scared when she heard the C-word. After that I would talk to the hemo guys in the hallway. I didn't want to lose it in front of Abby, and I didn't want her to hear the word "Cancer" ever again. Well a lot of good that did. Worse Grandma's death was caused by cancer and she had just passed away on Sept 29 and we haven't even had a chance to mourn her and now we were being swept into a hole and falling fast.
Abby's pain meds are finally working.
After an intense night of pain Monday came around and now the intussusception surgery was on. The surgeon, Dr. Vaughan, was also a familiar face as he had operated on Abby's plantar's wart 2 years earlier. I was very relieved to know who was doing the surgery. He mentioned that he would also removed a lymph node or two and fix her intussusception as well. At this point, I believe that the desire to get a look at the lymph nodes overrode the desire to see if the intestine would reverse itself. Abby would have her surgery tonight.
I kept telling Bry did you see the ER docs' faces. Now the other doc's are dropping the C-word. I was in denial and fighting to conceive it as best as I could. How could 4 people in my immediate family have cancer. Impossible.
After the surgery the surgeon came out -- he looked exhausted -- he said Abby was fine and went over exactly what he did in great detail. He said that the pathologist would check out the lymph nodes but just by eyeballing them they looked ok. It was ~7pm at night.
Tuesday, the PID Doc came in and talked about what they would do if it was indeed EBV that caused the lymph node problem. Even the Hemo guys seemed to be on that page as they both talked about Rituxan.
Wednesday, Then the EBV numbers came back and they were low and they should be getting higher. Not looking like EBV. So lets check her for CMV another virus with symptoms similar to mono. She has CMV but it isn't looking like CMV. The PID Doc is very kind as I lose my mind.
Pathology came back late Friday night. Nope it's Cancer. Abby will have to be transferred to the Oncology floor and start Chemo. Shit shit shit.
The oncology guys came on board and take control of Abby. Dr. Granger said they would all meet Monday to discuss Abby's results and let us know what was going to happen.
Now we had to tell Abby, her brother, and Grandpa who just lost Grandma. Shit shit shit. Of course I avoided it. I didn't want to believe it. What stage was she in? How long? Many questions began popping up and no one to answer them over the weekend. Grim looks all around. Nurses pity. Must maintain trust, must tell Abby exactly what is happening or she won't trust. How to tell her, what to say. Must tell her before we move to the cancer floor and she sees the other kids. Jesus.
A gal comes around Sunday and asks if we need help telling Abby. I am not ready to tell her. She says it must be done soon. Ah, thanks?
We talked to Thor first. He already sensed it. He had been searching on lymph nodes swelling and he already knew about lymphoma. He handled himself well and was ready to talk to Abby. All 3 of us tell her. Remember Auntie Mary had breast cancer and now she doesn't and she has survived. Abby begins to cry as all she can remember is Grandma just died of cancer. Remember Abby, Grandpa had cancer, and he has survived. Two people right across the street are cancer survivors. She weeps, "I have Cancer?" and her little head falls down with sobs. Abby you don't have what Grandma had. You are going to be fine. It gets blurry after that.
Monday rolls around -- a week after her surgery -- and the flood gates open. Doctors come by to talk. Sorry... Don't say it. Just give me the facts or I'll start crying. Don't show pity. Don't show compassion. Just give me the facts so I can maintain. "How's mom?" Don't go there. Just tell me what is going on. I must maintain.
Finally, the Doc who will work on Abby's cancer case comes by, Dr. Beam. He gratefully spent darn near an hour going over everything with me. I feel better after he talks to me. He is very factual, and not worried. She will only need 4 rounds of chemo, and each round of chemo lasts about a week. She will be able to go home in between chemos. He is encouraged, so I am encourage, and thus can encourage Abby.
Abby will need another surgery. A port will be put in so she won't have to have IVs stuck all over her arms. Over time we meet all the surgeons. Dr. Black stops by to check on Abby. Dr. Vaughan stops by too and tells us Dr. Bliss will put the port in as he won't be here that day. He reassures us that Abby is in good hands. Finally, Dr. Iglesias checks on Abby's progress after her port surgery. These guys are methodical and caring towards Abby.
We move to the oncology floor. Welcome to your new home.
Abby Oncology floor. When she would still eat hospital food.
My family is split now. I take mostly the day shift -- 12 hours w/ Abby -- Bryan takes the night shift -- 12 hours w/Abby. On Saturday we flip it. I go in late and take 24 hours so Bryan can recover and come Sunday night. Thor doesn't really see us. He continues with school and trys to maintain. Gramps has kicked in and gave me some time with Thor when he watched Abby on Thursday. Thor spent Friday with me & Abby at the hospital. So far so good.
When will the chemo hit Abby hard? I know there is no way we are going to get off scot free on chemo. The first two days are fairly smooth. Minus the water weight gain effecting her oxygen intake, especially when she sleeps. The Doc is correcting this by giving Lasix and Albumin. Two things we are familiar with as Abby used these when her Kidney was the big issue.
So far her kidney is holding up. She will at some point not be on her ususal anti-rejection meds. So far so good. Hold your breath, cross your fingers.
Chemo starts. Abby does well on the first leg of the chemo drugs. The Cytoxan aka Cyclophospamide (CTX) has minimal adverse effects. Then comes the Vincristine aka Oncovin (VCR) and Doxorubicin aka Adriamycin (DOX) and things start to head south. She has had 4 more RBC transfusions, 2 platelet transfusions, and several G-CSF (nupagen) shots to increase WBC counts. Also, fever has hit and thus IV antibiotics are brought into the mix.
The strongest reaction (as in the one that scared me) was when her BP jumped up. Normally, Abby is in the 100-119 systolic range. I watched as that climbed to the 140s. Worse the diastolic jumped to the 95-100 range and things started hopping. Then Abby was slammed with a huge headache. She was in so much pain. They stopped the blood transfusion, but that didn't stop the problem. It was speculated at the time that she was having a withdrawal reaction after being weened off the methadone. I am not sure what the final verdict was as to the cause. Blood pressure meds were ordered. Then Abby's vision was gone. She tells me she cannot see anything. I wonder if this is a migraine. The oncology doc (Dr. Heym) comes in to look at her and tells me he has called a neurologist and ordered a CT scan stat.
Stat is right. This is the fasted trip ever to a CT scan room. She is taken on a stretcher as she cannot lift her head up without making the pain worse. This isn't just a migraine headache. The neurologist stops by that evening, bout 6 pm and tells us this is reversible. The body will heal itself over time as her blood pressure is brought back to normal. He is a very congenial guy and good with Abby. He tests her memory and in spite of her headache and blindness she enjoys this exercise. He orders an MRI.
It takes 3 days for Abby's vision to return completely.
With this behind us Abby now fights the big 3 -- RBC, WBC & platelet loss -- that chemo induces. Maybe some day soon we will get to leave the hospital. Today is not gonna be that day.
Three weeks now and life as we knew it has ended. My kids are suffering from Trauma. Abby just wants to go home and sleep in her own bed. She has only asked "Why me," once. We have to stop getting our hopes up about going home as this only aggravates Abby's state of mind. We are like caged panthers only wanting to get out and get on with our lives. Thor who took everything in stride initially, now feels that his world is sinking. I try to tell him this is only temporary and if he can hold on till his Birthday things should right themselves by then. He so wanted independence prior to this event, and now he just wants everything back to the way it was. The mundane existence of yesterday is now longed for by us all.
The simple acts of making sun tea, and hanging clothes on the line now seem like a mirage and distant. Enjoying the night air or an early sunrise has escaped us. The moment has escaped -- you cannot live in the moment, and feel the moment any longer. Soon they will detach completely. How to keep them in the moment.
Finally, we get to go home. It must have been 25-27 days that we were stuck in that tiny room. It takes until 3pm Thurs and we are running to get to the door. We get in a good week before we are asked to start Round 2 of chemo. We hit the movies, the stores, and just drive around with the music blarring; singing.
Abby and I get outside to take a walk. We actually make it around the entire block. Abby hasn't been able to do this due to her anemia. We are impressed by how well the Chemo has helped her already. Her Hemoglobin actually hits 12.
---Then we psyche up, pack our bags and return.
It's Friday (11-14-08). We get some time in the H/O Clinic to relax and play. We arrived at 7am and left the clinic around 10:30am to head into the hospital for a procedure. A nice word for a lumbar puncture. Abby is scared and I try everything I know to still her while the child life specialist trys to distract her. Nothing works. The nurse holds Abby in position as she protests. I try to calm her with words, but fear is at the forefront of her brain and there is no taming it today. Dr. Eames preforms the procedure quickly, and we are allowed to go to the recovery room. Abby must lay on her back for an hour. We wait there about 30 minutes before a room is assigned to us. Gratefully, this room is much bigger, and our toes are spared stubbings. Chemo will start tomorrow. I haven't eaten all day. It is bout 1pm and I tell Abby I must have food. She refuses to eat hospital food and I try to explain to her it is about fuel at this point not gormet but it falls on deaf ears. I make a few trips to the car and get our overnight bags, retrieve my book & glasses, and then get myself some lunch. I see a friendly face in the hallway as the PID doc says hello.
We keep busy doing dumb stuff. I feel caged and stare wontingly out the window into the darkness. We sleep.
--- Saturday (11-15-08) morning rolls around and by 9am we are getting details about the chemo. Cytarabine (Ara-C) will be given via IV over 48 hours after an initial higher dose it given. We decide to hit the gift shop prior to being hooked up. Abby's knee is sore from fighting the nurse's hold during the LP. So we hobble about. The Doc on the floor today is Heym. He checks Abby out, and makes her laugh. 10:45ish the 48 hour chemo starts. Bry comes in and spends Saturday. I replace him on Sunday and stay until Monday when we are finally released. This time we are in and out in 3 days. Can't beat that. This chemo goes very very smoothly.
--- Monday (11-17-08) Starbucks has turned out to be my friend as I grab a hot chocolate and sit outside in the morning letting the cold air slap my face and I think I am living in two completely different worlds, but oddly I have found myself again. I think a combination of things has hit me (my mom's death and Abby's cancer) and the roles I've played for so long no longer contain me. I've crawled out, or should I say I started crawling out and someone saw me and pulled me out the rest of the way, and now I am me again; Ann. I wonder where I have been, or why I have been hiding, or did the roles of mother, wife, friend, sister, and daughter overtake my sense of self. Whatever, I feel strong, alive and ready to tackle anyone or anything. I won't let myself be buried alive ever again. Life is too short not to live it. LIVE IT. BREATHE IT. GRAB IT. I want again. How odd a sensation is that.
On the way back in the hospital I run into one of the oncology docs, Dr. Davis. Once in the elevator I push him to let us out. He laughs at me. I can't be the first pushy mom he has ever met can I? Anyway, it works and soon we are being processed to go home.
Good news, they want to switch Abby from G-CSF to Nuelasta to generate WBC. This will save Abby from getting 9 shots as Nuelasta works for 10 days. She is very pleased to get that news. This time we get out by 1pm. I had already packed most of our stuff in the car that morning in anticipation of clearing out. It is a beautiful day outside. Life is good today. We are leaving today.
We get a 4 day reprieve until Friday at 11am. Then it is back to the clinic.
---Friday (11-21-08) comes and the men are heading out to New Mexico to spread Grandma's ashes. I cannot go as I must take Abby to Clinic today. I feel remiss. I ask them to take pictures so I can visit Grandma's resting spot after Abby is better. Abby sleeps in as she doesn't have to get up for a bit.
We roll out at 10am. It is an overcast day. It is a cold day. It is a beautiful day. I find I am starting to like Texas and all seems right with the world. We get a good parking space and prepare our minds to be here a while. We get the nurse practitioner today, Mrs. Bayles. She is very nice even though I ask her a lot of annoying questions. We get out with in 2 hours. It is 1pm and I would like to grab something to eat at the cafeteria, but Abby doesn't like the smell of all the fried food. So much for eating, we leave and hit a drive-thru instead.
We get another reprieve as we don't have to go back until Weds, Nov 26th at 11am; at least we will miss rush hour traffic. We are also scheduled for an ultrasound (12-2-08) and Gallium scan (12-4-08) during the first week of Decemeber. We are then told that Abby will most likely start round 3 of chemo the 2nd week of Decemeber. We may luck out and get to spend both Thanksgiving and Christmas at home.
---Saturday (11-22-08) Reflection. I see the other chemo parents in passing. I see their faces sometimes covered in pain, happiness, tears, relief. Sometimes we talk on the elevators, or in the cafeteria. It is always quick, just a reassurance that someone understands, that someone else knows. While Abby sleeps in, I am up early and go for walks around the hospital and it is a ghost town. I like the weekends cause it is so quiet. I sit in the Pavilion and stare at the empty chairs and try not to think. During the day I like to sit out in the garden in front of the hospital to get some air or eat as the smell of food is nauseating to Abby during chemo. Honestly, some days I must take several walks outside just to quell the angst and regain control over my emotions.
Girl's Day Out -- Abby's numbers are high so today is our best chance to get out and be crazy while we can. Abby and I went to I-Hop for Breakfast. Rooty-Tooty Fresh and Fruity without the Fruity. Ummmm hot pancakes, and hot syrup on a cold day. Yes. After pigging out at I-Hop we then roll down to the RAVE Theater to catch Bolt in 3-D, and following that we walk the mall. Walking the mall was nice. We haven't done this in a long long time. It was great seeing all the Christmas trimmings and so many people enjoying their shopping. We looked at boots, sweaters, Webkins, and lingerie. Abby got a laugh out of that. Then we head home for some rest and relaxation. Once we get here there are 5 messages on the machine from Abby's friend Sheena. Sheena comes over and the girls play for about 3 hours. I am getting hungry, so we all head out to the local Italian restaurant for some pizza & calzones. Finally, we must call it a night and return Sheena home. This has been a long day. Abby should sleep good tonight. All is well.
--Wednesday (11-26-08 thru 11-29-08) Another visit to the oncology clinic. God I am so uncomfortable going there. Not because the kids are sick, or my little one is sick, but because I haven't a clue what I am suppose to be doing. I hate that we get a different doctor/ nurse practitioner every visit. I would like to have the same doctor every time so I can get my footing with someone and feel trust even if it is a mirage; I need it. Honestly, I feel like I am hanging in the breeze.
Abby's visit goes smoothly nonetheless as she only needs platelets. She has some bruising on her legs (due to lack of platelets), which I didn't even notice till I had her take a shower. Uncle Tom flies in today while we are at the clinic and the men are picking him up. I cannot wait to get home and start cooking for Thanksgiving. This is our first holiday without grandma (my mom). As soon as we hit our neighborhood Abby is begging to see Uncle Tom so we stop at Grandpa's first. My kids adore him. Tom is funny and loves interacting with the kids. The kids stick to him like glue and he doesn't mind even when they snuggle up. Life is good. We all head out to Saltgrass for a fine dinner. It is nice to be surrounded with family and laughter. Something that seemed a million miles away and unattainable comes to fruition. Abby eats an entire pizza, and Thor has the largest cut of sirloin he can get. It almost feels normal, yet I find myself staring out the window.
I am combating stress by working out twice a day. While this puts a damper on my stress it does not eliminate it. My temper pops out twice. Maybe that seems minimal to you, but you're not a red headed Italian are you. A little more flare, a lot more heat than most tempers and not many can stand up to it. Must work out some more or find an Italian male who will go toe to toe with me just for the hell of it.
-- Thursday (11-27-08) rolls around and it is time to get Bry going so he can get the turkey going at Grandpa's. Abby & Thor head over to Grandpa's too and monopoly is already out and on the table. I leave to continue working on cherry snow and mashed potatoes. I actually have the house to myself and I love it. Dinner comes a little late but we make it. The turkey is good this year.
-- Friday (11-28-08) we hit the movies and later we get pizza and everyone eats at our house. I am able to sneak in a bubble bath in the afternoon while Bry keeps an eye on the kids. Abby's little friend, Sheena, has come over. By 7:30 pm I am beat and go to bed only to be awake now at midnight and writing this. A least the dog keeps me company. She is a good snuggler.
-- Saturday (11-29-08) Tommy goes home and the kids are already sad that his visit is so short. I am hoping to cut out today and get some time to myself and hit the mall or the movies or both. Abby has another friend, Brittney, who is coming over today and may spend the night depending on how well Abby holds up. I don't want her to push it. I am already dreading next week as we have a packed schedule of visits at the hospital. I have been contacting my old friends as I find a need a buffer zone. Gratefully they have all stepped up to deliver; I picked good people to be my friends. I have felt so alone in Texas, I should have called them all sooner. I just wish one of them lived in Texas.
-- Tuesday (12-2-08)
This was a long long day. Abby and I headed to the hospital at 6:30am and arrived at 7 am. We actually found a great parking spot. We went into the hospital and registered her for procedures she was going to have later in the morning. By 7:30 am we are at the oncology clinic and awaiting our 8am appt. They pull her back at 8am and draw blood. The gals who do this are very very good at it and always get their stick the first time. We have learned to trust their skill. Then the waiting begins and goes on and on. Today is the worst day as the clinic is full. At 10am I remind them that Abby has a 10:45am ultrasound appt. They say Abby is next but it never comes. By 10:30am I am itching to leave and start walking and they stop me and say the doc says he will be with us shortly and we won't miss our ultrasound appt. You gotta know me, I absolutely hate being late let alone waiting 2 1/2 hours for someone else. Not in my personality. They finally give us a room. I call ultrasound and tell them I am going to be late (yikes) and ask if it is a problem. They say no. Still no doc. By 10:40am I have had all I can take and tell Abby we are going. We start down the hall again and run right into the Nurse Practicioner who says she is coming to talk to us and ushers us back to the room. By now I am so high strung and so don't want to be there. I don't even ask the questions I needed to ask 2 hours earlier. I just ask when we do chemo next. She says next week. I say ok, bye.
Next we arrive at ultrasound at 11am and wait only minutes before being ushered to our room. The gal gets 2 types of ultrasounds done in less than 40 minutes and we are now off to get contrast infused via radiology for a future gallium scan. The gentlemen there says they can use Abby's port -- so he loads her up with numbing cream and asks us to come back in about 30 minutes. It is now noon. We walk back to oncology so I can schedule Abby's chemo for early next week and Abby goes in the back to retrieve some toys she left behind. Now we walk back to radiology but pause to look at the christmas tree for a few minutes. Abby eats some cookies and drinks a pediasure. It is now 12:30pm and we arrive at our designation. Abby is rocking out and singing along with her MP3 player and this get folks passing through the hallways dancing and laughing at her. She is loving it. Her energy level is through the roof now. It is good to see. Finally into the radiology procedure room we go and they access her port and wait for a gentlemen called Steve to put in the contrast. We recognize him as he did Abby's last Gallium scan. He says he heard that I wanted to avoid going home traffic on Thursday so he rescheduled us for Friday morning as he has 2 other kiddos scheduled for Thursday afternoon and felt we wouldn't have gotten out of there until 6 pm or later. Thank God for small favors.
As we are leaving, one of the nurses tell us Abby is suppose to get a chest X-ray. I wasn't aware of this and a gentlemen at the radiology desk looked it up online and tracked it down. I was worried how long it would take. They said not long at all, cause they don't schedule chest X-rays. They were right, in 5 minutes or less we were heading down to the X-ray room with a tech. Don't in another 5 minutes. It is now 1pm and we are finally getting out of there....
-- Wednesday 12-3-08
At 9am I call oncology to get the rest of my questions answered. A message is left for the nurse practicioner. At 10am Abby and I are heading over to get the car safety inspected and an oil change. With all the crap coming down the car has been sadly neglected. By 11am we are out of there. By 11:30am Thor is out of school so we all head out to Cheesecake Factory for a nice lunch, followed by a showing of Twilight which the kids really enjoyed, and lastly followed by a trip to the bookstore. It is now 2:30pm and we head home. At 3pm the phone rings and oncology has called back. I finally get answers to my question. Yes, Abby will have another LP and her stay will be 3 days not 2 as this chemo is a 72 hour process. No food 6 hours before LP. Now we just have to mentally prepare for this one -- as our last extended stay at the hospital was caused by complications associated with this chemo regime. Must pay the bills and get all other ducks in a row.
-- Thursday 12-4-08
Time to order all of Abby's meds and one for me. I am able to do most of this online. We then head to the gym and produce our hospital bills as we have missed working out for 2 months. They extend our membership by 2 months to make up for our time missed. Then to Walgreens to get my meds, and walla the pharmacist recognizes us and comes out with all of Abby's meds too. I am impressed as I scheduled hers for a Saturday pickup. Then off to Targets to buy hats, gloves, and scarves. Yes, every year we can't seem to find last years hats & scarves. Then off to Fort Worth to the compounding pharmacy to drop off a prescription there. All ducks are now in a row and we head back to Keller. We stop off at Walmart looking for ornaments (that are not glass) as Targets only had glass ones. We find some basic ones and head home. I sleep. Thor arrives followed shortly by Bryan. We all head to Hobby Lobby to find more ornaments. Everyone picks a special one for the tree. 1/2 off sale too... We head home. Everyone decorates the tree. We are satisfied. Bry has a hankering for Chinese food tonight. So I order it and head off to pick it up while he watches the kids. Traffic is miserable and our order is wrong. The gentlemen graciously corrects it and gives us the sesame chicken for free. Woohoo... We sit down to a fine dinner and now everyone is doing their own thing... Even though traffic was miserable, I really enjoyed my evening drive in the darkness alone with no kids. I am a terrible mother... Friday is almost here. We plan on putting up some outside Christmas lights up this weekend. We form them into a giant Christmas tree on the east side of the house complete with a star on top. At least Abby will get to see the lights before we go back into the hospital. She missed Halloween and that broke both of our hearts. I so wanted her home for that one. Abby now weighs 62 pounds. Almost back to normal weight...
-- Friday 12-5-08
Abby's Gallium Scan Pics
-- Monday 12-8-08 thru Thursday 12-11-08
We arrive back at the oncology clinic in preparation for our extended hospital stay -- round 3 of chemo. We start by getting a weight, a height, and a blood pressure. All is well so we are then sent to the playroom area of the clinic with our numbing cream in hand. We apply it to her port to prepare for future access and blood tests. We meet with the doctor and let him know that Abby is suffering from cold symptoms. Oddly, we are surprised when this does not negate her chemo. We also review potential future scenarios of where Abby might be headed. Thus far, he still thinks only 4 rounds of chemo will be needed. We are very lucky if this is indeed the case. We then apply numbing cream to her back for the upcoming Lumbar Puncture (LP). Abby cries a bit knowing what is coming. We sit around until about 11:30 before we are sent over to 3 North for the LP. Abby does considerably better with this LP then the last one. It goes quickly and there are minimal side effects. Minus the fear that one of the anesthetic induces within Abby's mind. Off to our new home for the next 4 days.
Once Abby is situated I begin the mundane task of walking back and forth to the car to get our bags, then unload our things about the room for easy access. This is the chemo regime that kept my Abby stuck in the hospital for darn near 30 days due to nasty side effects so I am visibly not happy to be here wondering what will happen next. Abby begins to complain already of feeling nauseated from the LP. I step out of the room to ask the nurse for some zofran and see a familiar yet unacknowledging face. However, our nurse does acknowledge my request for zofran so I retreat to our room to calm Abby. At 3:30pm the next series of chemo drugs begins.
She is given Dexamethasone (steroid) orally plus eye drops for 5 days. The chemo drugs are Cyclophosphamide (CTX) via vein every 12 hours for a total of 6 doses. Six hours after each CTX, Mesna is given to help prevent bladder damage. Then 12 hours after the last CTX, Doxorubicin (DOX) is given via the vein over 30 minutes followed by Vincristine (VCR). Little A is woken up every 2 hours to pee. It is very difficult to rest during this chemo.
During this stay I take the first 36 hours at the hospital as Bry and Thor and Grandpa are all sick with some nasty cold going around. I arrange for Bry to see the doctor and get drugs to get him back on his feet so he can replace me. He finally does Tuesday night at 7pm. The the hip hop begins. He leaves by Weds 6am and I arrive at 6:30am and we repeat the cycle on Thursday so Abby has coverage. Grandpa takes care of Thor (shuttling him to and from school) and the dogs during the day. We are doing what many families are doing. Living crazy lives with little to no sleep. Oddly, living like this doesn't feel like a chore. It feels exactly right.
Each day I worry, and nothing goes wrong. Hmmmm. Then I begin to wonder if the last 2 chemo drugs in the series are what caused the previous problems. Yet, these too go off without a hitch. This round went better than expected and minus a few bouts of nausea that was it.
During this stay Abby got to meet some of the Dallas Cowboys and a lot of the Texas Rangers. Her favorite was the mascot for the Texas Rangers, Captain the horse. I got to speak to more moms and dads and hear their stories. Abby makes friends with a very nice boy her own age. They set it up so they can talk to each other on Webkins. Very nice indeed. Abby is feeling so much better that she asks to be left alone in the playroom without mom's watchful eyes. She must be feeling better because this hasn't been the case in the last 4 months. It is good for her to reclaim her independence and good for mom to catch some zzzzzs. Grandpa also visits her on Tuesdays and Thursday and affords mom some rest and alone time. Grandpa takes Abby to Kid's Chapel and follows her around the playroom. We also plan a trip to the movies this weekend to see, The Day the Earth Stood Still.
Father Eagle stops by to meet us on Weds and Abby enjoys his visit immensely. He gets her to name her IV pump, Joe the Pump, followed by Fred the Stethoscope, Bill the Bag (IV fluids), and Mark the Cuff (blood pressure cuff). We swap religious jokes and find we share the same Italian-Sicilian-German heritage. I like this priest. He kept his promise of visiting Abby again on Thursday. A man of his word, what more could you want from a priest. Abby wants to go for a walk around the hospital and runs into her new friend again and they chat all the way up the hall. Very cute. My kids are growing up in spite of all the craziness around them. Life goes on and that alone gives me much hope.
The worst thing about staying in an unfamiliar place with few of your things about you is that you inevitably sit around and think. Thinking can really mess with your head as thoughts pop in and out without regard for the state you are in. As always these thoughts lead to grandma. Grandma I miss you. I started calling my mom Grandma because when the kids were little it was confusing to them when I called her mom and then spoke to them about grandma. So Grandma is my mom. A huge piece of my life --of me-- was my mom and now that she is missing this hole seems to be growing larger and in moments like these with Abby's situation and no one to lean on (no one sitting there next to us) well something had to give, right. Sadly, every time we come to Cook Children's I see the hospital where my mom died. I stare out the window and there it is as big as daylight staring back at me; reminding me she is gone.
Grandma's wall.
I wondered if mother is one of those things that you can’t really put words to because she is bigger/greater than mere words and thoughts and it would be impossible to really describe what she has done/accomplished for us. F-A-M-I-L-Y was her favorite word and she plastered the letters on her wall, each over a foot tall. Perhaps she was reminding us of the greatest gift of all. She meant it too. She made a conscious wholehearted decision to give to her children her life, her soul, her strength. She carried that tradition on to her grandchildren and strongly impacted their lives. I don’t know how I could fill her shoes and be as good a mom as she was, but I try to live by her example for Mom didn’t always teach me things by talking to me, more by watching and seeing what she was doing. Even with death approaching she did what she needed to do and cared for us as she walked down that road. She prepared us as best as she could for what was coming. She knew.
My thoughts also turn to unacknowledging one. I still can't wrap my mind around them or figure them out.
As I said before, I started calling up my old friends and one in particular has stepped up more than the others by staying in constant contact with me especially through our visits/stays at the hospital. This kindness, this support, makes me feel like someone has my back again. I tell them all the stupid things I've done or experienced at the hospital and they still support me and help me through those time when I over think things. I only hope I am as supportive to them as they are to me.
-- Sunday, December 14th 2008
Today is zoo day. Cook Children's Oncology Clinic has a Christmas Zoo Day for the folks who are/have attended their clinic. Abby invites her friend Brittany as Dad & Grandpa are not over their colds just yet and won't be attending. We luck out and it is a beautiful day in Texas. The weather is mostly sunny, windy and in the 70's. We stop by the Keller-Haslet Airport to pick up Brittany and then we are on our way. Traffic is a breeze and we get a good parking spot as it is the off season. We have to kill some time milling around since we are a bit early. Thor is put in charge of the camera while Abby & Brittany are being nutty. We head over to the education center to get our bag of goodies and tickets. The girls put on their new shirts and we all head up the stairs for lunch. All the kids pick peanut butter and jelly sandwiches and I go for the turkey sandwich; a mistake because me and the turkey don't get along very well. Minus this little speed bump we march into the zoo and start with the elephants, giraffes, and white tigers. It is a lazy way to spend the afternoon and I get a lot of time to just think about nonsensical things and watch the kids mill around a head of me. It is good that they are enjoying themselves. By 1pm will are looking for the Wild Animal Show and can't find it. We have to ask 2 employees before someone sends us in the right direction. The kids wish to sit up front and I head for a seat in the back row where I can see everything and take breathers by stepping out into the sunlight for some fresh air. Thor decides that taking pictures of animal butts is the best way to spend his time. He gets some good shots of zebra and ape butts and is delighted with himself in a fashion that only other boys could really appreciate. He even takes pictures of the girls butts riding the carousel. We hit the old Texas town and visit the store and get a few pics in the old stagecoach. I am hankering for a horseback ride but they don’t have those at the zoo. I get the kids moving toward the zoo exit as I have reached maximum and now must leave at all cost.
-- Monday, December 15th 2008
Wake up. Work out. Wake up kids. Take a shower. Yell at Thor to get dressed and study for his test. Blow dry hair. Put on clothes. Put on make up. Let out dogs. Give dogs water. Check on kids. Drop off Thor. Give Abby meds. Feed self. Feed Abby. Feed dogs. Clean the kitchen. Throw in a load of laundry. Vacuum. Pay more bills.
Damn it is cold outside. I can't believe I moved here from Colorado only to face a nasty day like today. To think I threw away my old parka in celebration of moving here -- and now I am yearning for that ratty old parka and a pellet stove to boot. I don't even own a long sleeve shirt. Hmmmm.... I must go buy some and a pair of fuzzy boots too -- is that considered sacrilegious in Texas? Like hating high school football. lol.
Countdown to Christmas vacation. The kids have 4 more days of school left and are dreaming of presents under the tree and being free.
Today, Abby and I go to lunch, and hit the beauty salon for a couple of haircuts and fun with the hair stylists. I am really addicted to short hair (and a few other things too which I won't mention here). Little A looked like an adorable girl Vulcan at one point during the process. Abby still has some hair left, but I fear we are seeing the last of it. I am so glad we bought her a hat liner. The chemo is causing her scalp to be overly sensitive and her hands are peeling skin at an alarming rate. I am glad we will see the doctor on Weds so he can address some of these issues. I am wondering what her CBC will be this time and if we are still safe. I check her daily for mouth sores, and bruises, and monitor the redness of her lips while fearing that one night they may be pale and we will have to head in yet again. Her energy level is so damn good it is frightening. So much energy, so much life, so much living to be done. She doesn't nap anymore.
This day we finally ordered our yearly dose of Fannie May chocolates -- a nod to old Chicago and my childhood there. Oh the Mint Meltaways and Trinidads are to die for. We also send some out to Grandma in Montana to be shared with all the cousins. Now the folks on the radio are talking about pending ice storms so we must hit the store to stock up on food as I haven't really done a good shopping in 3 months. We also stop by Best Buy to buy another Maroon 5 CD to rock out to. Damn the cold air burns your skin tonight. Shiver. I can't remember ever being so cold. I take Abs to a hole in the wall Chinese restaurant as the guys are out at a Boy Scout Christmas party this evening. It is nice to sit inside and hear the sounds of real life: people talking, eating, and cooking. I can almost live in the moment without thinking. I just want to stop thinking for longer than a minute. Is that even possible anymore? How many of you wake up from a dream because your conscious mind won't stop thinking? Our stomachs are full and we head home in the dark blaring our music -- She will be loved, she will be loved. Tap on my window, knock on my door...
-- Tuesday, December 16th 2008
The quiet before the storm aka H/O Clinic visit tomorrow. Bry worked from home today due to traffic accidents on the 114. Thor sulked because there was no ice in Keller, TX thus he had to go to school today. Abby cracked the books at home and managed the usual classes: handwriting (cursive), math (learned how to calculate rates today), vocabulary, grammar (review plus prefixes), science (the black rock -- magnets), and history (French and Indian War). I managed to clean out the coat closet and donate a bunch of old coats that don't fit my kids anymore. I then moved on to the ever exciting laundry room and cleaned that up too. Very boring stuff, but with H/O looming cleaning is a good stress buster. Then errands had to be run. First, the bank to deposit some checks, then to Walgreens to pick up a ceramic heater, then to Burger King so Little A can eat some chicken nuggets, and finally home. I get to talk to 3 Toms today; my dad, my brother, and an old high school friend. Since Bry is home I head over to the gym for a stress buster workout for an hour, then hop over to Thor's school to pick him up, then we go fill the gas tank in preparation for H/O tomorrow, and finally a quick visit into the store for some french bread so we can make garlic bread with our spaghetti dinner tonight. Dinner is served early as everyone is home for a change. The kids are anxious to wrap Christmas presents so we uncharacteristically wrap early and place the gifts under the tree too. We are doing this just in case we get stuck at the hospital during Christmas. After 2 hours, I decide to go to the gym yet again for another workout. This is a real good workout and I am able to run intervals for a change. The cold I have has loosened it's grip and I can fly. I spend an hour doing this. Finally, the stress feels under control. I hope sleep can find me tonight. Time to tuck the kids in...
--Wednesday, December 17th 2008
When it gets cold outside and you got nobody to love... Yeah that's what I feel like when I go to the hospital or clinic. Really you have to keep in mind that this is a business and they are just doing their jobs while you are facing a horrendous situation -- it's just so damn cold in there.
Another early morning visit to the H/O clinic. We drop Thor off at school 8am and head on down to the clinic. We throw on some Maroon 5 and Abby is out like a light. I have to take the side roads as the freeway is packed. I hop off at Western Ctr Blvd. and cut down to Blue Mound, which turns into Terminal, which turns into Main St. and takes me to Belknap which turns into Summit St., hang a left on W. Terrell and bam your there. Woohoo. We arrive early and walk to the cafeteria so I can get some OJ. Then back to clinic to sign in and begin the wait. We find a quiet corner by the surgery office to wait. It is not as crowded as H/O and you can hear the nurse yell out your name just fine. Abby lays down and falls asleep again. Hmmmm. Why so tired? Finally, we are called back. The nurse takes her height and weight. Abby has lost some weight and now only weighs 59 pounds. Must fatten her up. Then she says she isn't going to draw blood as Abby is scheduled for Chemo. What?
Indeed, Abby is scheduled for chemo (a dose of Vincristine (VCR)) and I didn't know this. A road map would be nice. I know they have one, but I would like to get a copy of Abby's actual road map so I can follow along; not the generic road map. Yes, I am going crazy. I don't like surprises. The nurse gives us some numbing cream and send us to the back to wait. Finally, Abby gets accessed. They draw blood for labs and I ask if they have enough blood left over to do a Bun & Creatine, which luckily they do. Her kidney numbers are great. Now we wait and wait. Finally, we are given room 2 to see a doctor. We get the NP not the MD (no doctor). She says Abs is neutropenic meaning her WBC is totally shot. Not good. She offers that if Abby gets a fever of 101 or chills to just head into the hospital right away. Also, Abs will need RBCs today. Okay. Then back to the waiting area and we sit and sit and wait and wait for 2 more hours. I am getting jumpy now and begin to press the nurses as to what the deal is. Was the blood ordered, is it on it's way? Can we do the chemo while we are waiting? I really want to get on with it. So they get Abs a Tylenol and I give Abby Zofran. Finally, the tiny syringe of chemo arrives and that is given to her. The blood shows up about 1pm and now we are stuck here hooked up until 5pm. This is an 8 hour clinic visit. Waaaaay too long.
The good news is Child Life. They keep the kids entertained very well. Abby gets to play piano, and sing. Then they paint bird houses and play board games. All good things come to an end and by 1pm everyone is gone. We are one of 3 families sitting back there. Eventually, we are the last family sitting in the clinic and I am left scratching my head; why so long. My Italian temper is flaring and I fight to keep myself calm. Is there anyone out there cause it's getting harder and harder to breathe.
Child Life saves the day.
