OH Winter

My husband got shingles in November. He has an auto immune disease called Crohn's. It affects his digestive system and for him particularly his small intestine. We visited his specialist in October around the time Henry finished the induction phase of chemo.  Jeremy asked if he should get the shingles vaccine which I don't remember him ever mentioning before but his doctor said it was a good idea.  Henry got his flu shot while he was knocked out for a lumbar puncture and bone marrow biopsy the next day and the rest of us all got ours the week before.  We played at Lagoon for Frightmares and made a family trip out of all the doctor appointments. We also bought a new to us van with half the miles our old one had.  I had had a nasty cold that I was finally feeling better from so had stayed away from Henry trying to keep him from getting it but while we were driving home he got a fever which we are supposed call and go into an ER for.  We were caravanning home so Jeremy tested out the speeding capabilities of the new van and drove Henry to the nearest ER between Utah and Idaho Falls. I caught up and took the other kids home while Jeremy waited with Henry for testing and preventative antibiotic IV.  He just had rhinovirus but Henry got better way faster than I did! We also got results from the bone marrow biopsy that the leukemia was almost undetectable and he was in remission. Basically treatment is to make absolutely sure they get every last cancer cell and the protocol is the same whether he was in remission or not.

We started to settle into weekly doctor visits going to Utah and home in the same day.  Ellie would go play at Grandma Myra's and I would usually take Henry.  For one of the trips he screamed and screamed partly because he had a 2 week break in between treatment phases and thought he was done.  The week after the screaming Jeremy took a day off from work and took him to his appointment because I was beside myself with just misery.  I was angry and sad and feeing like a terrible person for subjecting my little boy to such tortures.  After a one week break for me I started bringing one adult friend and one of our other children to play with or help or entertain Henry. My mom came, Aimee, and Lisa. I enjoyed their company so much and they were huge helpers and my favorite was my sweet Annabelle because she reads my mind and thinks I am crazy and fun. One of his visits he had another lumbar puncture and afterwards he had the worst of headaches he wouldn't eat and just stayed laying down for about a week.  We learned that spinal fluid can leak when they do the puncture which causes an imbalance in the fluid and a killer headache. They told us caffeine can help the headache and to keep him drinking fluids. He hasn't had a very bad headache since. During one of the phases e were able to limit trips by having our home nurse and their pharmacy provide some meds at home. In November Jeremy had some sores on his chest and when he showed me I thought they could be ingrown hairs but they just didn't look right. He was sore and had more the next day and by evening was pretty sure he had gotten shingles. He found them on a Sunday and went to a doctor on Tuesday and they for sure were shingles.  Roller coaster of another virus and trying to keep Henry from getting it because treatment can make his previous immunizations worthless. Also, it really is confusing on if you can get chicken pox from shingles and if you get shingles from chicken pox. Well Henry didn't get anything.  Everyone else did. Thank goodness for vaccines because I got chicken pox, maybe 8 or 9 of them, mostly on my back (had it when I was 1 and you CAN get it again!) and 3 of the children had 2 or 3 pox. No one was very sick and the only hard thing was staying away from family just in case. Jeremy recovered quickly even though he never got the vaccine after talking to his doctor. we were blessed to catch it early and not pass it to our new baby nephews.  We had a great Thanksgiving with the Bowens and visited Neeleys too.


Around this time Henry had a reaction to peg asparaginase. It is an IV chemo med he had once before while in hospital and there is a 50/50 chance of a reaction the 2nd time so they were watching him closely. They said the reaction would take about 30 minutes to show and right around 30 minutes he started throwing up. A nurse passing by stopped his IV and got a nurse practitioner and in about 3 minutes there were 10 people around. My friend Lisa had come with us and she got out of the way very quickly and then there were a bunch of nurses all standing around waiting for him to react more or find out what his doctor would say. This one nurse practitioner sets me on edge whenever I see her.  I feel like she gives worst case scenario information as if it is what is currently happening and not as just a possibility. While everyone is standing around waiting for the actual doctor to come, because throwing up is not actually a common allergic response, she is telling me they may need to take him to icu and give him an epi shot and what the heck lady! He looked mostly fine except for having thrown up and I started crying and then the doctor comes and calmly says "this is not a typical allergic response and we want to give him something more to help with nausea and a possible reaction and try again." Which sounded the most logical and not nearly so terrifying.  So everyone went back to work and they restarted the IV and kept an eye on him and at exactly the 30 minute mark his face and arms started to break out and look very red. Lisa noticed it first and we got the nurse. They turned off his IV and flushed his port and he was looking normal within half an hour. Since he reacted to the peg the alternative medicine would have to do but there was a question of if they could get it or not.  It is also an every other day infusion for a total of 6 infusions.  UGH!

Most of the time after this while doing some meds in home and still going weekly we kept in touch with the hospital to see if they were able to get the new med (Erwinia) in time for him to have it when he is scheduled to. For most of the time they weren't able to order it because it has been on back order and the manufacturer had closed down the ability to order more for more than a month.  They had a backup plan if we didn't get it to try to desensitize Henry to the peg but he would need to be in PICU and it may not have been as effective in treating the cancer and it was just a big if for most of it. But so was getting the med.  They pushed his treatment back week because they still hadn't heard and on that Friday I got a call that they were able to order the Erwinia and he could start the following Tuesday at his appointment.  It took some work scheduling so that we didn't run into Christmas Eve, Christmas or the day after he ended up starting on a Sunday.  Thankfully and blessedly we were also able to break up drives so Jeremy took him twice, I took him twice and Grandma Myra took him twice. And then we had a great peaceful Christmas. We over did the gifts mostly with books and more expensive items but all the book have been read by now and the other things are in near constant use so we did well I think.