Day 23 of 57 in Consolidation Phase

We are thankful to report a good week for our family! We are going on almost three weeks out of the hospital! We are surrounded by summer colds right now and really praying/hoping that Elliot avoids it. Dave and Addie both have colds, so we feel like it’s only a matter of time until Elliot gets it too.

Last week (6/9), Elliot’s counts were all great which allowed us to actually take him out places. We feel like whenever his counts are good, we need to do something fun to get him out of the house! So we took him to the pool one day and another day we went and had a family picnic in downtown Greenville and let him and Addie play around in the fountains (see picture). He wasn’t too fond of the water, and preferred to stay put in his stroller (which was okay by us!).

We were making some progress with his walking, but that’s gone backwards a little bit. He gets one type of chemo called Vincristine (VCR) which affects the nerves in your legs, feet, and jaw. The doctors think this is most likely why he can’t walk well. He also has developed some strange jaw quiver which happens occasionally, also most likely from the VCR. He’s had two doses of the VCR the last two weeks, but now he’ll get a break from that type for 3 weeks. Hopefully, the break will give him some time to work on his walking skills!

Yesterday (6/16) Elliot’s counts were all very low which was as expected from the chemo the prior week. His platelets were only 60,000. They need to be 75,000 in order to get his high dosage chemo this next Thursday. We go back on Monday to get his platelets checked. If they are still low, then they will probably give him a transfusion so hopefully they will be high enough to get the chemo on Thursday. This chemo requires an overnight hospital stay as well.

Elliot seems to tolerate the chemo well. Occasionally he gets extra cranky, but it’s hard to know if that’s because he’s almost two or if he doesn’t feel well! His eating is sporadic. Yesterday, all he wanted to eat were pickles and hotdogs. Today, he won’t touch those, but is eating saltines, peanut butter, and some oatmeal. The week before last his eating habits were almost “normal”! He does not like sweets anymore (so won’t touch a cookie) and seems to crave salty foods. Mealtimes are never dull around here trying to find something that tastes tolerable to him! The kitchen counter is usually full of different food choices.

"Weeping may tarry for the night, but joy comes with the morning."
Psalms 30:5

Consolidation Phase Continues

We are thankful that Elliot has been feeling well for the past week and we have been able to stay out of the hospital. He is gradually getting more mobile. He will crawl and scoot around, walk with a walker, but he still does not walk on his own. We were re-assured that this would return over time.

Today was a busy day at the doctor's office. He got another lumbar puncture (LP) with chemo in his spinal fluid, and received 2 other types of chemo IV. We started the LP earlier (9:30) which was nice because he can't eat or drink before it. We had to stay at the office for a while because one of the IV chemo drugs (PEG) takes an hour to infuse and he has to stay an hour afterwards to be sure he doesn't have a reaction. Everything went well. He was a little cranky later today, which we are attributing to his treatments this morning. The following video is at the office during his PEG infusion.

Busy Week

Another hectic weekend. On Saturday night Elliot developed a fever of 100.8 axillary, so after speaking with his doctor we were admitted to the hospital.

Fortunately with this admission (and every admission since the first one) we did not have to go through the ER, but went directly up to the Peds Hem/Onc floor. They did the normal workup of drawing blood and starting him on IV antibiotics. On Sunday his hemoglobin was low (7.3), so he got a blood transfusion. He still had a fever and his IgG (immunoglobin) level was also low, so the doctor ordered IVIG for him. This is essentially a collection of antibodies to help him fight infection. It is given IV over a few hours. He acted agitated for the first part of the infusion, and about an hour and half into it started to have a reaction to it. He was shivering, his skin was turning blotchy, and he spiked a fever of 102. They quickly stopped it and gave him a dose of Benadryl and solumedrol (steroid) to counter the reaction. He was feeling pretty miserable on Sunday, but by Monday he was feeling better. They kept us until Tuesday to be sure everything was okay. His blood culture never grew anything, and he hadn’t had a fever since Sunday. On another good note, Elliot is starting to take some steps with assistance. He doesn’t want to do it on his own, but with help he will walk about 10-15 feet. Hopefully, he will start walking soon because the doctor did mention physical therapy if things don’t pick up with his walking.

We were supposed to have his LP (lumbar puncture) on Tuesday with a dose of chemo, but it was postponed until Thursday morning to give him a break and let his body recover. He had it yesterday and everything went well. The most difficult part is not letting him eat or drink anything before the procedure (which didn’t start until 10:30). He kept saying "I'm hungy."

We had been planning on Melissa taking our 4 ½ year old daughter, Addie, to Myrtle Beach (a trip which was originally planned for our family before Elliot was diagnosed with leukemia) with her sister and family and her parents the next day (Sunday 5/29). We had waited until recently to tell Addie about it just in case something came up, which of course it did! But, it all worked out thanks to some extra babysitting help from Dave’s brother and wife. Melissa took Addie to Myrtle Beach Sunday night and spent a couple days getting her settled and visiting her family, and now Addie is having a great time spending the rest of the week with her cousins, aunt & uncle, and grandparents. We are so thankful that she got to go and have some fun! We really want her life to be as “normal” as possible through all this. It makes us sad that we didn’t get to have our whole “family” part of the trip and especially to see Elliot missing out on so much but are glad that Addie got to go. She really has taken everything in stride and has been great with Elliot. She loves her brother very much. She knows he has cancer, is very sick, and will be sick for a long time, but obviously does not grasp the seriousness of it all.