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.

End of Consolidation

Last Friday (7/15) Elliot woke up with a fever of 100.9 so he was admitted to the hospital again. He got the normal workup—IV antibiotics, blood culture, and IV fluids. His hemoglobin was low (6.6) so he received a blood transfusion. He felt miserable on Friday but started feeling better on Saturday. Sunday he had an AGC of zero (normal would be over 2000, special precautions are taken when it gets under 500) and because it was so low the doctor wanted him to get 72 hours of the antibiotic. We were not discharged until Monday. His AGC was only 48 on Monday, so we were told that it wasn’t likely to begin the next phase on Thursday (7/21).

Thursday was a quick appointment at the office. He had labs drawn and they told us that his counts were not high enough to start the next phase. His AGC was up to 500, but it needed to be at 750. His platelets were 63,000, but they needed to be above 75,000. Everything was trending in the right direction, so he just needed more time to recuperate. They gave him a birthday box and we went home. We were actually happy with this because that meant we got to have Elliot’s 2nd birthday at home! We threw together a little family party and celebrated Thursday night. He liked trying to blow out his candles and looking at his cake, but he would not eat any of it. We are so grateful that God has blessed us with Elliot!

The plan is to start the next phase (Interim Maintenance One which lasts 64 days) tomorrow 7/26—assuming his counts are high enough. This phase starts with him getting put to sleep for a lumbar puncture and chemo in the office. Then he will be admitted to the hospital for another type of chemo, high dose Methotrexate. This type of chemo requires lengthy IV fluids before and after administration, and the drug takes 24 hours to infuse. This means a minimum of a 3 night hospitalization. He will get this type of chemo 4 times over the next 8 weeks, which will mean a lot of hospital stays. I think the term “Maintenance” is a little misleading in this phase considering all the hospital stays! At any rate, we are hoping his counts will level out somewhat during this phase enabling Elliot to get out a little more.

This new chemo that he will be getting is known for causing some pretty nasty mouth sores. Elliot is already not eating well (we are assuming because nothing tastes good to him anymore), so please pray that he does not get any of these! He has lost four pounds. He is not wasting away by any means, but is obviously thinner. He seems to latch onto a certain food and eat only that for a few days. This week it is peanut butter and jelly sandwiches – for breakfast, lunch and dinner.

And to end on a positive note, Elliot was in such a great mood all weekend! It was so refreshing to have our happy son back for a few days.

Day 50 of 57 during Consolidation Phase

Today we finished Elliot’s last chemotherapy for the Consolidation phase! One more week of “Consolidation” in order to let his counts recover, and then we start the “Interim Maintenance” phase. Yay! It’s been a busy week for us complete with several trips to the doctor’s office, 1 blood transfusion, and 2 platelet transfusions.

Last Thursday (7/7), Elliot’s labs were very low. His platelets were only 9,000 and his Hemoglobin was 6.4. They tell us this is to be expected from the chemotherapy, and it will probably happen again. It helps to expect it, but it still doesn’t make it any easier! So, originally we went in for routine chemo, but ended being in the clinic the entire day from 9 – 5 in order for him to get platelets, chemo, and blood (in that order). It was one longggg day. We did what we could to keep him occupied (including "pole surfing" -- see video to the right). The doctor wanted to see us again on Monday (7/11), to get his labs checked because they had been so low on Thursday. Sure enough, his platelets were still low. They were a little better (up to 17,000), but still low enough to require a transfusion. We stayed at the clinic until 1 that day. Today his platelets were good – up to 110,000. His hemoglobin was a little low (7.5) and his AGC (his immunity count) was very low-86 (500 is the cutoff for extra precautions, so he is way below the threshold). We are homebound for a while. We will go back Monday to get his labs checked again because of his borderline hemoglobin. We are glad it is less than a 10 minute drive to the hospital!

If Elliot’s counts have recovered by next Thursday (7/21), we will kick off the next phase of treatment with chemo in his spinal fluid (a procedure done in the clinic where they put him to sleep), and then we will be admitted to the hospital for 3-4 nights for a type of high-dose chemo that he hasn’t had yet. His platelets need to be 75,000 and his AGC needs to be 750 to start this phase, so please pray especially that his AGC will come up this week! We would really like to stay on schedule with his treatment. This means that we could be spending Elliot’s 2nd birthday in the hospital. Not exactly what we had planned for our son’s 2nd birthday party! Thankfully, he’s not old enough to realize it, and we will celebrate it later when he’s feeling a little better.

Elliot has been extra grouchy this week, and it has been incredibly draining. Not all the days have been difficult for him but a lot have. It’s hard to know if he’s just being 2 or if he doesn’t feel well. He has had a runny nose and cough, but thankfully he has not spiked a fever. His eating is still very sporadic, and he has lost 3 pounds so far. Praise the Lord that we had a fat baby :)! This week all he wanted to eat was oatmeal and pickles (including drinking the pickle juice out of the jar – gross).

“Cancer is a signpost pointing to something far bigger: the last enemy that you must face. But Christ has defeated this last enemy (I Cor 15). Death is swallowed up in victory. Cancer is merely one of the enemies scouting parties, out on patrol. It has no final power if you are a child of the resurrection, so you can look it in the eye.” David Powlison, Suffering and the Sovereignty of God, page 211

Day 42 of 57 during Consolidation Phase

We are so thankful that God has protected Elliot over the past few weeks. We have all had colds in our family except for Elliot! He has been feeling well. His is walking all over the place now, but he still falls a good bit from being unsteady. He gets frustrated with it sometimes and just wants to be carried, but it is nice to see him walking again.

Another answer to prayer is that on 6/20 his platelets were over 200,000 (up from 60,000 four days earlier). This, and his good AGC, allowed us to continue on track and be admitted for a particular type of chemo on 6/23 (Cyclophosphamide or CPM). It was a one night hospital stay and we were able to leave the next morning. Except for this planned hospitalization we haven’t been in the hospital since the few days on 5/28. This is remarkable considering the low counts he has been running for the past few weeks.

Last week we had what we thought was going to be a quick visit to the doctor’s office, but his hemoglobin came back low (7.4) and he needed a blood transfusion. It took longer waiting on the blood to be ready than to transfuse it. We got to the office at 9 am and didn’t get out until 3 pm.

During this phase we had to start giving Elliot shots at home of a particular type of chemo (ARA-C). We (Dave) gave them 4 days then had 4 days off. Then gave them for 4 days and had 2 weeks off. We just completed another 12 day cycle of that on Sunday. He quickly learned what was coming when Dave got the syringe out and would start crying, but it got better towards the end because we started using numbing cream on his abdomen before the shot. Either way, we are glad we are done with that for a while.

Elliot’s birthday is not until July 22, but since Dave’s parents were in town visiting over the weekend we had a little celebration for him. The picture is when we were trying to get him to blow out the candles on the cake Mom-mom made for him.

Tomorrow we have another doctors visit where Elliot is scheduled to get two types of chemo (PEG and VCR). With the PEG they worry about him getting a reaction. He’s had it a couple of times already and done fine, so we pray that continues.

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.