Platelet transfusion went well last week. Ellie was able to enjoy her weekend and then Monday the Nurse came in to draw blood. Ellie’s platelets although they did not come up completely high enough, they came up considerably. Doctor really frightened us when we spoke about the platelets being so low. Apparently Ellie is extremely susceptible to a brain bleed when her platelets are that low. Because she has a brain tumor the littlest thing can cause a brain bleed. The examples the doctor gave us were Sneezing or coughing too hard or hitting her head. My response was awe that’s no big deal, NOT. Talk about scary. Needless to say the doctor thinking that this is going to be a regular occurrence and we might need one or two platelet transfusions a month while she is on this new Chemotherapy. Good news is that they are going to be more conscious of it so they don’t drop. I know I really took it hard last week when I found out, in the scheme of things I know its not a big deal but it was that news that kind of through me over the edge. I felt much better about the whole thing after she received the transfusion.
This Monday when the nurse came in to our home and took her blood counts we discovered her red blood cells were low. We made a decision not to put Ellie through another transfusion and see how it played out. Unfortunately when she woke up on Tuesday she was lethargic and didn’t even want to sit up. At that point we spoke with someone from her medical team and they felt it was best to come in for a transfusion of blood. So we began the Journey downtown. I call this a journey because it took us over 2 hours to get downtown. Traffic was rough. We left the house as soon as Jake was off to school. Ellie was a trooper through everything, she had lots of tears but she did everything I asked of her. We got settled in day hospital thinking it would be just a few hours. It was an interesting day because Ellie was in Day hospital for six hours getting a transfusion, sitting in a chair. I know this is not the time to be grateful, but I was so grateful it wasn’t Jake. There is no way he would sit for 6 hours. As I watched other moms try to maneuver their IV polls with there kids I realized what a good girl Ellie is. She did get to meet with Willow her art therapist for a bit. When Willow showed up it was the first time I saw her smile all day. Ellie just adores doing art with Willow. Unfortunately she was so tired she fell asleep while doing art with Willow.
I would say the most touching thing that happened all day was (not sure how to explain this so I will do my best). In the chair next to Ellie was a teenage boy that was extremely mentally challenged (not sure what the proper terminology is). He did not have any cancer issues but need a transfusion for something else. Ellie woke from a nightmare crying, we could not even fully wake her from the dream at first. Well this sweet boy started to cry because he was so concerned that Ellie was sad. Well then of course the nurses started to tear up and I would be lying if I didn’t say I tear up a little too. It was very touching at the time, but now I look back and have to giggle that we were all crying over Ellie’s nightmare.
Anyhow she was finally done with her transfusion around 4:30pm, just in time for traffic on the way home. On the way home Ellie began to throw up in the car. Wasn’t sure what to do, so contacted the hospital. Keep in mind we were only about 15 minutes from home when this began. I was thinking I would have to endure the drive back to the hospital, which was moving like a turtle. But the doctor on call just said to keep an Eye on her and if it got worse to head back. Ellie started to ball, she was crying that she didn’t want to go back. So I crossed my fingers gave her some Zofran and hoped for the best. Right after giving her Zofran she threw up again, I then held off about a half hour and she seemed to get better. I guess she just doesn’t handle blood transfusions well. It has been an exhausting couple of weeks, but I can’t complain because Ellie is amazing. I guess often I forgot about the severity of Ellie’s condition but these past two weeks I have been reminded over and over, and that just knocks me off my feet.
Next Wednesday is Ellie’s MRI and I would be lying if I didn’t say I have a knot in my gut every time I think about it. It is the most nerve-racking thing I have to go through every 10 weeks. We have yet to receive a good MRI so please pray that this one shows the growth has stopped. We just need some good news.
I also wanted to invite everyone to attend the One For The Kids event on April 28th; no matter what Ellie’s results are from her MRI this is a night of celebration. Celebrating Ellie’s life and having a great time. We cannot wait to be surrounded by Family, Friends, and Ellie supporters. You can go to ONEFORTHEKIDS.org to order tickets for the event. If you can’t make it you can also purchase raffle tickets.