Wednesday, September 9, 2009

I wish I could....

Get into my babies mind to tell him that this is the last time for a little while. This is the last needle, just take one more. We will have a break after this last poke. Try not to scream and be as tough as you can. There is a reason why I can't. Because in the same breathe I would have to say I don't know if we will get a break from this. I would tell him SCREAM as loud as you want baby. You have every right. I can't make you any promises. How glorious it would be to tell a two year old that God does not give you more than you can handle. How wonderful it would be if he understood. The IV's were terrible. He screamed and screamed like it was the first time. When he blew his IV this time, he screamed. He grabbed for his arm as if a large hornet was stinging him. The nurse had just tried to push benadryl and it was a no go. She tried to flush it but for whatever reason it seemed as though the break in the vein was higher up in his arm. She tried to explain that it wouldn't hurt his arm that high up. I said "well something isn't right, turn it off and lets call the IV team." He immediately fell asleep after it was shut off. So of course we had to wake him back up to be poked again. He cried so hard he had the after burn cry. The intermittent deep sigh gasp breathes. Once the benadryl was finally on board he slept in a pink benadryl cloud and we were able to turn the IVIG up to max volume and get the profanity out of there.

Of course I arrive home with emotional luggage that I dare not show at the hospital. Not able to take another word into my brain without releasing. Who cares if it was the last one for awhile. It did not make it any easier. I still am not sure if we will make it a month without seeing at least seeing the doctor. When asked about his levels and the LDH being up their response was a bit comical. Both doctors seemed to try and search for words at first and fumbled, as if they weren't expecting me to bring up his levels right off the bat. I laughed and mocked them tenderly, "a a da be ba levels." They said the LDH could be up for many reasons. We will wait for the ALD to come back. I am not sure they will change course until next weeks levels come back in from that blood draw. They will also be checking his white blood cell count. The white cell blood count elevate when one is sick. Gary's levels go lower because they are knocking his immunity down. They have to moniter that level to determine next months dose of Cytoxin.

Through my eyes.


  1. Erika, I love how you write. Thanks for sharing your thoughts and frustrations. It's what I feel at times, but have a hard time expressing.
    I love this picture of precious and innocent.
    Hugs to all of you!

  2. I am not sure if there are any words to help the situation, so I will note even try. The picture above says it all. If I were there, I would give you all a big hug to show the support I am sending your way in prayer and words. If I were you, I would cling close to your hubby, kids, friends and family as the ones closest to you are the ones you need the most. I almost forgot your church family. You will find invaluable love and support there. This was real evident last week to me, as we had some very good friends who had a son get married. An outdoor wedding was planned for Saturday, and lets say that rain changed that. With our support of the members of our small group bible study, we managed to transport everything about 10 miles to the church, prepare for the rehearsal and dinner, and decorate the church all within 30 hours. WOW. It was exhausing, but well worth it. Just remember above all, Jesus loves you and will never leave or forsake you. God bless and keep you, Lynn

  3. have you considered asking your doctors about having a port-a-cath placed? It's standard operating procedure for the children with various malignancies, given the need for frequent IV infusions & labs. It might be worth exploring ... just a thought.

  4. Port-a-Cath, in the beginning my friend Kalee advised that I insist they put a port in or at least a pic line. I tried. I asked and everyone was for until news got to the Rheumatologist. She said NO. At the time she said she would think about it but they find these kids will fight infections much more. I am not sure if you put me back to that point if I would have argued more or fought more to have one put it because despite the trauma, he has had no fevers, and just one little infection from what we thought was his sinuses in June. So it is very very hard but now we are to the point where we will be getting once a month treatments, hopefully.