Friday, June 19, 2009

Bad Day

Today was a bad day. In fact, Jerad and I were just discussing that it was the worst day that Ally has had yet. Her stomach pain continues and it is constant and it is a sharp, hurting pain. It woke her up about every half hour last night. She just wakes up crying in pain. It was so bad that Jerad hopped in the car just after midnight and went to CVS looking for pain relief. We've tried Mylanta, Pepto, Tums..nothing budges it. The prescription prevacid that she is on does not work either. We spoke to Dr Broxson today about our concerns. There has to be something to alleviate the is actually not even one of the side effects from the chemo or the steriod. The doctor started thinking that maybe it is because of the two antiobiotics that she is taking for her fevers and to keep the germs at bay. So we are stopping both of those. He decided to give her an infusion today of antibiotic (thru her port) that lasts about a month. If this works, we will be so much happier. And we have the added benefit of not having to adminster medicine at home every morning and every night. Please say a prayer that this takes the pain away from our little girl. Enough is enough already.

She also got two more doses of chemo today. Upon testing her blood, they found out that her hemoglobin was too low (probably adding to her general feeling of misery) so they had to give her another bag of red blood. Our quick visit to the clinic ended up being about six hours because the blood takes a few hours and that new antibiotic took an additional hour to infuse. Nothing ever goes as that is how we live our life right now. No plans...all is just wait and see. For two big planning accountant types, this is a bit hard for us to swallow. We just never know. We tell people...we may be there, we may not. Just wait and see. I guess we are living proof that life can be lived flying by the seat of our pants. (wondering where that phrase came from now?) Our good friend Kim Grant, who works at Children's, was supposed to be observing in the Hemoc area today. Coincidentally, she sat through much of our appointment with us. She was a bit taken back by all the medical jargon being thrown around and how much information must be processed. (We have learned so much in 21 days.) And, of course, how sad it was to see little innocent Ally sitting there crying and in pain. She was barely cracking a smile. She was in complete misery today, I tell you, and noone wants to see it.

I keep looking forward to tomorrow morning. Our friends, the Soins, have come up with the perfect "gift" for us. They have arranged for a massage therapist to come to our house in the morning and do a massage for each of us. We don't have to leave the kids, we just take turns. But we could really use it right now. Especially after a few nights on that hospital couch. This is quite a treat.

Finally, a lot of hair is falling out now. Ally is getting quite bothered by this, primarily because it is itchy and annoying. She is not too vain...I am not sure she will care about being bald. We will see. I don't think we will have her hair for too much longer. We are expecting a visit from the hair fairy tonight. This picture is her deposit for tonight. Apparently, she is a cousin of the tooth fairy. And if you leave your hair out, she may leave you something. Who knew?

Please just keep praying that we get through this extremely hard time. Pray for Ally to feel pain. For Jerad and I to have the strength to deal with it. And for little Carly and Evan's life to just remain as normal as it can. They are dealing with the absence of their parents, both physically, but also mentally as well. Even when we are here, we are just merely getting by.


  1. It was very hard to see that sweet innocent child with no smile laying on the table waiting to see what the nurses and doctors do next. It was almost too much for me to see without crying. Of-course I am not going to do that in front of Ally. She is actually a real inspiration the way she handles all of this. I am also amazed at how Jerod and Janel keep their composure through this whole ordeal. The nurses and physician must have thrown out 5 different drugs and those were not even the chemo drugs. They were for her infections, pains, etc. caused by the 'poison' she is having injected into her tiny little body. Like Janel said, this is a little girl who never had anything - even a tylenol before this. I do know this, I will go to bed tonight not complaining about my aches and pains. It definitely puts things into perspective......Let's hope her stomach aches subside after today.
    Kim Grant/ Member of Ally's Army!

  2. Wow that is some hair. Wonder what the hair fairy will bring her? Interesting!
    I hate to hear that she's in pain and I hope that the antibiotic switch helps. Ally doesn't need that on top of everything else.
    You know as well as anyone all the ups and downs and highs and lows that come with sickness. Today may have been down, but it will go back up again. She's doing so well. I don't know if I could do what she's doing, but I would trade her in a minute so that she doesn't have to go through it. I'm hoping she has a good weekend and I think she will!

  3. Janel, Jerad, Ally, Evan and Carly .... I haven't posted a comment yet, but I have been following this blog and am grateful to have it to feel connected to everything that you are all going through. You have been in my prayers everyday. My heart aches for Ally and each of you. I pray that you will be strengthened and renewed everyday as you face each battle.
    Shelly H

  4. I cannot tell you enough how much I appreciate having this blog to read. I feel so terrible being so far away from all of you. I can't wait to be there in a couple of weeks. I love all of you very much. Be sure to give all the kids a kiss from me.

  5. Ally has had a lot to deal with lately and so have you. We are here to support you and praying that Ally's stomach stops hurting. Praying for a good Father's Day for you too. I hope you love your massages today.

  6. Oh, how I hate to hear that Ally is having such pain - I feel for you and know there is nothing we can do but pray that this all gets better- I think Ally will be beautiful without her hair - it will make those gorgeous eyes stand out even more! Know we are thinking about you every single day! Hope today is a better day....

  7. Praying for Ally and you all as always! Specifically, will be praying for Ally's pain to go away so she and you can at least get some rest during the night...which should help the following day be a little easier to handle. Praying for brighter days for your family.

  8. It breaks my heart hearing that Ally is in pain... there is so much for her, and you, to deal with, I had hoped that she would remain comfortable for her treatments... I pray that the doctors figured out what could be causing her to be so ouchy, and that they can fix it... quickly!
    There are SO many fairies out there ;) Ella actually had a visit from the diaper fairy when she began potty training... and she got so many nice pairs of panties! And then, when she began sleeping in her big-girl bed, instead of on the floor like she has for the past 1.5 years, a fairy came to help her through the transition! I just don't know what we would do without them!
    Many hugs, many prayers and many thoughts for you all...
    Gary, Jill, Ella and Grant

  9. The "hair fairy" - that is such a neat way to look at it. Bless you for being wonderful parents. I hope Ally feels better this week. I was going to stop by the clinic on Friday but had meetings outside the office. Know I'm thinking about you guys!