The End! The End!

We are home from the hospital and want to shout from the rooftops that we are DONE with this phase of treatment (High Dose Methotrexate)! That's right - DONE!

Fin!

The end!

No more!

We've had our hospital bag packed since the end of January. It is amazing to think that I can now unpack it for good and put the dang suitcase in the closet and out of sight. Although, I will keep the to-go emergency bag that I've always kept packed since Elena was diagnosed, packed. As much as I wish and hope, I'm not so naive as to think that we'll never be inpatient again during the rest of her treatment. In our short 5 weeks in Maintenance we saw that it isn't without it's hiccups - especially during the winter. But, it is just such a relief to be done with this phase and not be planning life - babysitters, scheduled appointments, how I grocery shop, etc. - around the next trip to the hospital. And now, two more weeks of oral chemo at home for this phase and then back on to Maintenance!

The Plus Side of this HD MTX phase:

• 5 year relapse free rate increased by 10% (!!!!) - that makes anything worth it. We are so grateful to have had this treatment available to Elena to increase her odds.
• 3 months of maintenance steroids skipped FOREVER :)
• Meeting lots of new cancer families
• Getting to see a different point of view. Although our inpatient stays were nowhere CLOSE to the stays that AML families endure, I do feel like my eyes have been opened and I have a very small taste of another side of treatment that I hadn't experienced. Before, our inpatient experiences were limited to when Elena was diagnosed and when she has been sick. Those have been difficult. But it is a whole new level of difficult to have scheduled inpatient stays every few weeks. (Which may sound counter-intuitive, but go with me.) It is very wearying having scheduled inpatient stays every few weeks that you don't know exactly when they'll start (due to counts) or exactly when they'll end. They are complex to plan for - our lives have been in limbo the last three months and they are very draining on families. You get home and start to get your feet under you (and by "you", I mean the whole family) and then you have to head back to the hospital. Anyways, I'm grateful to have seen a little bit of a new point of view.

The plus side of being DONE with HD MTX:

• No more yucky HD MTX side effects
• Getting back into a routine!!
• Being home!
• Being all together as a family!

We were so blessed during this stay - Elena had virtually no side effects! It was a miracle! We know that all the many prayers in her behalf were answered. The beginning of our stay was the hardest part, as she entered the hospital with a very painful ear infection and had a "reaction" to her lumbar puncture that made her back hurt for most of the day.

After that first day, it was pretty smooth sailing as far as side effects went. She had such a hard time with round 3 that we were really worried about how she would do with this one. It was amazing! Everyday I waited for her to start to lose her appetite and get sick and lose her energy, but it never happened. She is eating as much as ever and hasn't missed a beat. :) In fact, just as I sat down to write this update, she said, "Mom, I'm hungry. I want noordles!" (No, that's not a typo, that is what Elena calls Top Ramen. :)) Thank you for praying for Elena. The doctor noted several times that he couldn't believe she was on chemo and that it was hard for him to even keep her in the hospital when she was looking so good and bouncing around and chattering like she was.

In the hospital this last week, we were in the same pod with a newly diagnosed family. My thoughts constantly wandered to them. I saw their somber, often tear-stained faces and the flow of visitors and I just wanted to run over to their room and throw my arms around them and assure them that as horrible as life is right now, that it DOES get better. Oh, how I wanted to tell them that it will get better! Trials don't necessarily go away, there will still be bumps in the road, but things get better, life normalizes, and your lives really will have so much more depth and sweetness laced into them.

It all got me thinking a lot about when Elena was first diagnosed. A sweet memory came back to me that I had almost forgotten. The third night or so when we were in the hospital after Elena was diagnosed, Elena was having a horrible time. I'm sure she still felt horrible, she was sick of all the poking and prodding, and most of all - the steroids had kicked in. She SCREAMED for hours on end and there was nothing we could do to help her. After a few hours of this, our neighbor knocked on our door and said that she'd heard Elena (no kidding - you can just about hear normal talking through the walls!) and just felt so bad for her and wanted to come over and see her. Elena was still hysterical and wouldn't have anything to do with her. But, she sat and talked with Eric and I for a while - told us her story (If I remember right, her teenage daughter had Down Syndrome and ALL, or was it AML? She had other kids at home and lived somewhere in Utah County and was bouncing back and forth between everyone) and commiserated with us and was just so sweet and compassionate in spite of the fact that Elena's screaming was probably driving her distracted. :) I can still remember the kind, sincere look in her eyes - I so appreciated that visit. I was impressed by her strength and optimism in the face of such huge trials. I want to be more like that lady.

Here's to moving forward.