Merry Christmas

photo courtesy of Molly Flanagan

Elliot was discharged from the hospital on Thanksgiving evening. He came home with his port accessed and we continued his IV antibiotics for 8 more days (once a day). His counts were still low the next two weeks for his office visits, so we just started the next phase, Interim Maintenance II, on Tuesday, December 13^th.  He has to repeat Interim Maintenance and also Delayed Intensification because he was moved to the high risk category because of his high Minimal Residual Disease (MRD) test on the 29^th day of treatment. Otherwise, he would already be in Maintenance now.  

This phase started out with a lumbar puncture, intrathecal chemo (given in spinal fluid), and two types of IV chemo. Then we came back the next day for another type of IV chemo. He has been feeling well for the past few weeks and has been happily playing. It has been so nice to have our happy boy back! It’s also been great to have his counts up so that he can get out of the house. All the chemo during this phase is scheduled for outpatient, so hopefully we will stay out of the hospital for a while.

We hope you all have a very merry Christmas!

“For unto us a child is born, to us a son is given; and the government shall be upon his shoulder, and his name shall be called Wonderful Counselor, Mighty God, Everlasting Father, Prince of Peace.” Isaiah 9:6

Day 51 of 57 during Delayed Intensification One

Last Wednesday Elliot got a transfusion of blood and platelets and then was discharged home that evening. Then he wasn't feeling well on Monday and spiked a fever again on Monday evening. Since he has very few white blood cells (his WBC level was 600 on Monday night), his body has no way of fighting bacterial infections. Melissa took him to the hospital around dinner time Monday, and they drew labs and started him on IV antibiotics right away just in case the fever was caused from bacteria. His platelets were very low, so he received a platelet transfusion that night. This morning the doctor told us that his blood culture came back postive for bacteria. The doctor thinks it is possibly a contaminant, but he needs to be treated fully in case it isn't. Thankfully he has been on IV antibiotics since Monday night and seems to be doing well (although as of last night, he was still running a low fever), but he will need to be on them for a full 10 days. Tomorrow they should know the specific organism from the culture which could affect his antibiotic regimen. They are trying to set up home health for us to be able to give the IV antibiotics at home. If he stays fever free we could/might get to go home tomorrow. He seems to be feeling well today, but his WBC level dropped to only 400 this morning. Please pray for God's protection for our little man especially during this time when his counts are "precariously low"!

Day 43 of 57 during Delayed Intensification One

So sorry for the long delay in blog posting. The last few weeks have been very busy with clinic visits, steroids (and a steroid stricken toddler), and chemo. This phase has really hit his blood counts hard resulting in us being house-bound most of the time. We are very thankful for family and friends who take Addie out!

The first few weeks of this phase included two 7 day rounds of steroids. This is the first time we have had them since the first phase (Induction), and thankfully he didn’t have to have them as long as last time (although the dose was a lot higher). The steroids made him very hungry, grumpy, and unable to sleep well – just plain miserable. We were all very glad to be done with these for a few months!

We had one quick planned hospitalization (one night) on day 29 for chemo. He was admitted because of the need to hydrate him adequately before giving it. This went well, and he was discharged the next morning.

We’ve also done two rounds of the chemo drug Ara-C. Many of the doses we had to give at home by shot (on the days we were not in the office where he could get it IV). This drug drops all of his counts (white blood cells and red blood cells). Friday we gave the last dose at home and then had a clinic visit to check his labs. His hemoglobin (Hgb) was 7.3 (it was 13.4 the week before) and his platelets were 17,000 (they were over 300,000 the week before), so he received transfusions for both. This was done in the hospital because they couldn’t finish them before the office closed. His white blood cell count was 200 and his AGC was zero.

Elliot was admitted to the hospital on Sunday with a 101 temperature under his arm and is still there. He was started up on IV antibiotics and they drew blood cultures. Thankfully his cultures have been negative so far. His IgG level was low, so they gave him IVIG yesterday. Last time he got this he had a reaction and they stopped it before it finished. This time they pre-medicated him with Tylenol, Solumedrol (steroid), and Benedryl, and he tolerated it fine without any complications.

We are expecting for him to need more blood transfusions tomorrow. We are hoping to be discharged from the hospital on Thursday. His counts will still be low for the next several weeks, so he will have to be readmitted if he gets any fever. He usually likes the hospital, but he is getting a little sick of it this time around.

Thank you for your continued prayers!

Day 2 of 57 during Delayed Intensification One

We were pleasantly surprised to go to the clinic yesterday and find out that Elliot’s counts were up enough to start this next phase. His AGC had to be above 750 and just four days earlier on the previous Thursday it was ZERO. The doctor told us Elliot had a greater than 50% chance of being admitted to the hospital over this past weekend with a fever, but he remained fever-free!! We are thankful to our God for answering our prayers and protecting him. Everyone at the clinic was very doubtful that his AGC would be up enough yesterday to start this next phase, but it was just barely up enough – 765.

The kick-off of this phase was a busy day. We got to the clinic at 7:30, did lab work, the clinic staff accessed his port, gave him zofran (for nauseous from the chemo), and then the pediatric intensivist doctor sedated him. Once he was asleep, a vascular technician from the hospital came over and did an echocardiogram (he had one of these when he was first diagnosed for a baseline). The doctors needed to make sure his heart was still healthy in order to begin this next phase, which it was!. Then he got a lumbar puncture with spinal methotrexate, and 2 different types of IV chemo. Oh, and he got his flu shot :). We certainly don’t need any flu going around our household this year!

We also started him on steroids last night at home. He will be taking steroids for the next 7 days, then a 7 day break, then 7 more days. Steroids hit him very hard last time he was on them, so please pray that he will tolerate them well and that God will give extra grace and patience to mom, dad, and sister. We go back to the clinic on Friday for a different type of IV chemo (PEG).

Psalm 66:19 – “But truly God has listened; he has attended to the voice of my prayer. Blessed be God..."

Day 56 of 64 during Interim Maintenance One

Thank you all for your prayers during this last phase. It has been very busy, but thankfully everyone in our family has remained healthy so the only hospital visits have been for Elliot’s scheduled chemotherapy.

The last 2 months have had 4 four-day hospital admissions for infusion of high-dose Methotrexate, 2 lumbar punctures in the clinic for Methotrexate (this is put directly into the spinal fluid in order to get to the brain), and 4 IV pushes of Vincristine.

For the hospital admissions, we would arrive at the hospital early Tuesday morning and stay until Friday evening. The picture is him hanging out in the playroom at the hospital. Then, we would be home for a week and a half and do it all again the following Tuesday. I felt like I just had time to finish unpacking in order to get repacked again! The first time Elliot received the high-dose Methotrexate in the hospital, he was VERY grouchy and miserable the week following. He also got some mouth sores. We were concerned that this was going to be the case each time he received it. But thankfully, that was the worst time. The other 3 times, he handled it great. The type of chemotherapy he received during this last phase did not wipe out his blood counts (and was not expected to).

It has been wonderful having a bit of “normalcy” in our lives with Elliot’s counts being up the last couple of months. We were able to go to the beach for a couple days, the zoo, the park, the pool, etc. (live like a normal family!). We have a new appreciation for little things like all four of us eating together at Chick-Fil-A (but definitely no play areas for us)!

Elliot’s next phase of chemotherapy will begin on October 4. It has more intense chemotherapy and is expected to wipe his blood counts out again. It kicks off with steroids as well, which we are not looking forward to. In addition, there are several new kinds of chemotherapy that he will be receiving. Please pray that he will not have any adverse reactions to these! We are especially concerned because a little boy just ahead of Elliot in the treatment just went into liver failure from one of the chemotherapy drugs.

"In God I trust; I shall not be afraid." - Psalm 56:11

Day 14 of 64 during Interim Maintenance One

Two weeks ago, Elliot’s counts were high enough to begin Interim Maintenance One (a total of 64 days). This phase kicked off with a lumbar puncture for chemo in his spinal fluid. When they gave him the propofol, he started giggling and laughing when he received the sedation. Not for long of course—he was asleep in a few seconds. After the LP we were admitted to the hospital where they gave him a dose of Vincristine (IV push) and started him up on IV fluids. Tuesday evening they started the high-dose Methotrexate. It infused over 24 hours. Then they continued IV fluids and gave him Leukovorin every 6 hours. This is a “rescue drug” that rescues his normal cells from the effects of the Methotrexate. While giving the Leukovorin they continued to check Methotrexate levels in the blood to ensure it was being eliminated. Thankfully, his body did not have any problems eliminating the Methotrexate and, on Friday (8/5) his level dropped low enough to send him home.

Elliot did not eat well in the hospital and that continued when we went home for about a week. He had some nausea from the chemo and threw up a couple times. In addition, on Sunday after we got home we noticed a couple mouth sores (a common side effect of the Methotrexate). The doctor gave us a prescription (magic mouthwash) that was supposed to help with the mouth sores, but getting a 2 year-old to swish mouthwash is impossible! Fortunately, the mouth sores cleared up on their own, and he has been eating better and feeling better for about 5 days now….just in time to get some more Methotrexate tomorrow :(. Tomorrow, he will be admitted for the 2nd (of 4 in this phase) high-dose Methtrexate. If all goes as planned, will be there from Tuesday morning through Friday evening. It will be another long week in the hospital!

Elliot’s counts were high enough this past Sunday for us to all attend church together. This was the first time we have been to church together and Elliot has been at all since the beginning of April. It was such a blessing to be able to all be together to worship our Savior with our church family! We are so grateful to be part of such a wonderful group of believers.

Delayed start of Interim Maintenance One

Today we went to the clinic to begin the next phase of treatment. We thought for sure that Elliot’s counts would be high enough! Even after the preliminary lab work came back, we were optimistic since his platelets were over 200,000 and white blood cell count over 3,000. However, his AGC (a measurement of specific types of white blood cells) was only 100 (down from 500 last week). His AGC needed to be 750, so they sent us home and told us to come back in a week. The doctor said it is very common for kids to get held back a week or two during this part of the treatment plan. Due to his low AGC (his immunity count), we will be homebound for the week. It’s a little discouraging to have to wait to continue his treatment, but hopefully he’ll continue his good mood from the previous few days since he hasn’t gotten any chemo.