Friday, September 30, 2011

Ups and Downs

This past week has been overwhelming. So much is going on, and there are never enough hours in the day. We have had some incredibly amazing moments, where you want them to last forever, and we have had some super stressful, scary ones too. Not only is Cancer a 24/7 job, but it's also bipolar. 
After the balancing act of the steroid home dose, Saoirse had such a great Sunday and Monday. On our Sunday evening family walk, she laughed at Fallon playing with the neighbor dog, and waved to the people getting home from work. We even found a fun little historical landmark hidden behind a house down the street - super cool! She even had a decent time at clinic on Monday. But she stared in on the low grade fevers on Tuesday, and was borderline all night. After a night of no sleep for us (we were checking her temp every couple of hours), she managed to go down to normal for like an hour in the morning, but we went in to clinic Wednesday because we really felt that she at lest needed blood, and that she was going down hill fast. Lo and behold, a fever spike kept us in, and we stared the inevitable hospital stay. 
The hospital is always a little bit of a nightmare. First off, we aren't on the usual ward, 6 North, we are next door in overflow, 6 East. At first we weren't so sure about the switch, but after being her, we kind of like it. For one, it's a ton quieter overnight, and it's a little calmer; plus it's all private rooms! The downfall to being in overflow, is that we were waiting for a room forever because they had to discharge someone to get us a room. It just meant that my sick kid was hanging out not feeling well, and in limbo for a while. Granted, most of the limbo was spent eating the pasta dinner they had on the floor that night (nice for me because I didn't have to try and find food once I got her in bed), but still a pain. Once we got the room settled, we had to wait for the doctors over here to write all her orders for the night. Unfortunately, she was due for a dose of hydrocortisone right away, and we had to wait for it from pharmacy. This was the only thing that was really worrying me, but they were doing their best to get it up here. It was a late night, but overnight went pretty well, with only a couple of wakings, and her pain seemed to be pretty well managed. 
Thursday we thought was going to be an upturn, but it definitely was not. The day started ok, fevers seemed to be spacing out a bit, she was drinking and eating some, and she wanted to be up and playing a bit. She took a long nap, and once she got up, she seemed ok, but in a bit more pain than she had been. When I left around 4 she was upset, but Mike says she danced around a bit before bed. Now I don't have a full account of the craziness overnight, but according to Mike and the nurses and doctors, it was an absolute nightmare. High heart rates, low blood pressures, skyrocketing temperatures that wouldn't stay down even with tylenol, and talk of a transfer to the ICU. Alarms were going off constantly, and the whole team was in and out all night watching to make sure she would stabilize. 
The first I heard was a text at 7:30 Friday morning telling me that she might be transfered to the ICU. Of course, I panicked, and called Mike to find out what was happening. Apparently, her counts had dropped super low, and she was not handling the stress well at all. They stared blood transfusions (platelets and red cells) in the early morning, and I suggested they put a cooling blanket under her before they resorted to ICU. Those things seemed to do the trick, and she began to stabilize. Once I got in, she started to wake up, and when she snuggled with me for a few minutes, she seemed to perk up a bit. She did even better when they turned her pain pump up a little, and she asked for the bottle for the first time in two days. Her fever, although still there, was staying down for longer, and not spiking so high. She actually ate and played and talked a bit. After her nap, she had some more to drink and some carrots, and wanted to run around so we had the nurse disconnect her from her leads. She wasn't totally into walking at first, but after a trip to the playroom and train table, she was enjoying wandering around and playing with the balls. She drew with one of the other little girls, and they were having fun sharing crayons and tickling each other. Saoirse was chatting her up, and Adry was totally into the "conversation." She was like a totally different baby. She did have a little temp when she was going off to bed (after I tortured her by giving her a ton of oral meds), but all in all, the day was much better by the end. I just hope that it means her counts are starting to rise, and that she can start healing herself over the next day or two. 

Our other challenge of exploring Saoirse's treatment options continues to be intensely stressful. There is so much to read and learn and decipher about how to treat this erratic disease. Unlike Hodgkin's, which is straight forward and pretty uneventful to treat, Neuroblastoma continually changes its game and tries to sneak in nasty tricks. There are a lot of opinions on treatment (one other parent went to the conference held in Chicago and said it was like a sales pitch), but we are focusing on the ones we think are feasible for us and her, and hopefully don't require us to move out of state full time. Today we made progress in finding a local IVC clinic, and talking to Sloan Kettering in NYC. I am hopeful that by Monday we will know more about those two parts of the puzzle. However, I still feel that although we take steps forward each day, time is ever closing in, and the pile of reading and research gets ever larger. There are so many variables to consider - I know why some parents just let the doctors do their thing and don't look farther than their first introduction. Some days I wish that I could be that parent. But I'm not, and I have to look at the rest of the world and decide with knowledge, or else I would always wonder if there had been something that I missed. This is both my downfall, and my triumph as a parent, and I'm pretty sure that it won't be the last time I am confronted with a nasty, research heavy decision. I do, however, hope that it is the last time I have to make one that involves life and death. 


  1. Sending you & your husband lots of uplifting energy and posiitive prayers for your sweet baby girl. Blessings mixed with blissful moments also.

  2. Dear Kezia,
    I read your story just now on the CNN website. My hearts hurts for what you, your husband, and Saoirse are going through and your entire family. My family has been deeply affected by cancer, but I've never had a baby in the family with cancer.

    Saoirse is beautiful and precious. I'm sending you my prayers and a virtual hug and hopes that cancer will become a distant memory.

  3. bipolar - very good word to describe cancer! a year ago, we seemed to be on a revolving door with the hospital - in for a week, home for a day....and on it went.
    prayers for a quick visit

  4. I am so sorry, Kezia that you are going through tough time. As I was going through tough time with my son for GERD and his unbalanced sleep.... I have nothing to say to you but you are truly SUPERMOM!!!! I admire you! I hope that your princess would feel better soon and make appropriate decision for her treatment so she can be better.. With all the love and care! Soyoung

  5. Praying for your beautiful daughter. Sending you positive energy from across the country!! Hang in there. We've had lots of cancer in our family and its no picnic that's for sure!

  6. so sorry about the fevers and low pressures- we have certainly been there. glad she seems to be coming around, and thrilled you are in touch with the NB team at MSKCC- from the other parents we have met on our journey here while being NED for the past three years, all comment that they feel terrible for any family dealing with NB that does not find their way to Sloan Kettering. The Hu3F8 trials started a few weeks ago- ALL with money funded by band of parents. It is so incredible what the patient/parent community in New York has been able to do to help with the research. Also, Dr.LaQuaglia (trained at Boston Childrens!) is the most renowned, kind, and brilliant surgeon in the country. He truly is a miracle worker and treats every child as his own. What physician did you speak with? I would be more than happy to give you my email or other contact information as we are so happy we have found MSKCC and the continued hope and benefit it has provided our family.

  7. Kezia! I saw your history in BBC Brazil notices...I'd like to desire you and your baby very, very much health! You will win!
    Would you like a litlle post in my blog to divulge your history to brazilian people? see you! best!
    Hugs from Sao Paulo!

  8. ugh, it all sounds so harrowing, you guys are amazing! We feel stressful just reading the series of events - can't even imagine having to go through it. We know from first hand experience how thorough and diligent you are and we know you'll find any answers that are out there. We're rooting for you guys and thinking of you often!

  9. I just read your story on CNN and tears ran down my face trying to imagine what you are going through. I will be praying for your little girl and thinking of her often. I have a 7 month old baby girl and couldn't imagine. Keep fighting the fight!

  10. My heart goes out to you and your family. There is hope. You MUST see this video about the work of Dr. Stanislaw Burzynski in curing cancer and the fight he has been in for decades to bring this to the public. Just watch the first 3 minutes.

    Quoting from US Patent #5,605,930 transcript: "The neoplastic conditions treatable by this method include neuroblastoma, leukemia, myelodisplasia, acute glioma, prostate cancer, breast cancer, melanoma, lung cancer, medulloblastoma, and lymphoma” to name a few."

    I have no interest in this treatment process.