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 13th. 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 29th 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
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"!
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.
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..."
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
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.
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.
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.
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
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.
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
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.
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.
It’s been an eventful week for us. Last Monday 5/16 was Elliot’s last day of steroids (for a while). It took a few days for the effects to wear off, but he finally started smiling and laughing towards the end of last week. It was and is so wonderful to see! It had been several weeks since we had seen any amount of happiness come from him. He still is having trouble moving. He can’t bear weight, walk, crawl, or roll over. He can sit, but if he falls over, he’s stuck. That is most likely still a side effect from the steroids, and he should regain his strength soon. His bald spots were getting worse, so we shaved off what we could of his hair this past Friday.
We got the results of Elliot’s bone marrow biopsy back on Monday 5/23. They run a precise lab test that tells the Minimal Residual Disease (MRD) remaining in his body (basically, the amount of leukemia cells remaining that are not detectable by normal blood work or under the microscope). Elliot has been classified as standard (or average) risk so far in the first phase of treatment (called the "induction" phase). Based on his blood counts, the doctors were pretty confident that his MRD would be good and he would continue standard risk. However, that was not the case. In order to stay standard risk, his MRD had to be below .01 percent and his was at .23 percent (yes, that is twenty-three times higher than it should have been). The strange thing was that at day 8 of his treatment, his MRD was below .01 percent. So sometime between day 8 and day 29, it multiplied. It appears that his body has not been as receptive the chemo as they would have liked. The doctors are puzzled about this, but thankfully our God is not! Because of his high MRD, he got bumped to the high risk category and his chemotherapy will intensify for the next phase (called the "consolidation", which lasts 57 days). We checked back into the hospital on Tuesday and spent one night for some more intense chemo, but came home today (Wednesday). We now begin chemo by mouth and by shot at home, and he will have chemo injected into his spinal fluid the next three weeks in a row.
The MRD lab test is a relatively new way of guiding leukemia treatment. The current thinking is that a higher number means higher likelihood of relapse. The goal is to intensify his treatment now in order to prevent relapse in the future.
We know that we have a lot of prayer warriors out there and we apreciate it more than you know! Here are some specific ways you can pray for us.
Full and complete healing for Elliot!!!
That his body would be responsive to higher intensity chemo, that it would kill all the leukemia cells in his body, and that he would have minimal short-term or long-term side effects from it.
That his mobility would return.
Peace and strength for us. As you can imagine, this whole thing is a roller coaster ride. This week's news was particulary discouraging for us.
“Bless the Lord, O my soul, and all that is within me, bless his holy name! Bless the Lord, O my soul, and forget not all his benefits, who forgives all your iniquity, who heals all your diseases, who redeems your life from the pit, who crowns you with steadfast love and mercy” Psalm 103: 1-4
We are near the end of the first phase of treatment (induction), and tomorrow is a big day. We are going into the office for a bone marrow biopsy, a lumbar puncture, and a dose of chemo in Elliot's spinal fluid. The results from tomorrow's tests will help determine the course of treatment for the next phase called "consolidation". We probably won't get the results for a week. We are praying that everything looks good and that the leukemia is in remission (no detectable leukemia cells).
Elliot has been miserable for the past week. He doesn't walk, stand or play. He is wiped out--wanting to be held (by Mommy if she is anywhere in sight!) and taking frequent naps. He is hungry but tends to eat only a bite or two and then asks for something different (like, what he has doesn't taste good to him). He does like riding in the stroller and going for walks so we do that frequently. His hair is also starting to fall out. Today is the last day of his steroid therapy (for now), and we are hoping this will help him feel a little better.
For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal. 2 Corinthians 4: 17-18
The above picture is Elliot helping give his chemo during the last hospitalization (on 5/9). He is bloated from the steriods.
UPDATE: His procedures went well. The hardest part was not letting him eat or drink anything before (they didn't start the procedures until 10:00). They had trouble getting blood for his labs when we got there, so eventually had to get them from his port after it was accessed. Thankfully, he was put to sleep for the lumbar puncture and the bone marrow biopsy because the bone marrow biopsy looks painful. We should get the results next week. Thanks for the prayers.
We were told that over the course of Elliot's treatment we would have unplanned hospital admissions, but we didn't think it would be this soon. This past Friday, Elliot spiked a fever of 100.5 under his arm along with a bad cough. We had been thoroughly drilled by the hospital staff to call the office it was ever over 99.5 because his immunity is so low he may not be able to fight an infection on his own. We called the office, and they told us we needed to be admitted to the hospital. Fortunately we could go right up to the Pediatric Hem/Onc floor and skip the ER. They drew some blood cultures, started him on some IV antibiotics, and took a chest x-ray (which was clear of pneumonia). Elliot felt miserable all weekend. Although it was hard to see him so pathetic, it was actually easier to have him in the hospital than last time. He laid around a lot and did not even want to get out of the bed. We are grateful that the cultures didn't grow out any organisms (which leads them to think it was a viral infection), and his lab values continued to improve each day over the weekend (platletes, hemaglobin, and his AGC are all up). He was scheduled to have another dose of chemo tomorrow, but instead they gave it this morning in the hospital and discharged him afterwards. He was worn out and took a 5 hour nap today!
This morning when Melissa got Elliot up from his nap, he had a bloody nose with blood all over his face and on his sheets. Then when she went to wipe him while changing his diaper she was getting blood on the wipes (although none was visible in his stool). We called the office and they told us to come on in. His Hgb was stable (12.1). Some of his clotting labs were a little off, making him susceptible to bleeding, but nothing was off enough to warrant a transfusion yet. Since we came in they gave him his dose of chemo today. This was the first time they have accessed his port since being discharged last week. We put some numbing cream on the port before to minimize the stick of the needle accessing it. Needless to say, Elliot didn't like having it accessed, but they were able to give the chemo and draw labs in about a minute and then de-access the port. His AGC (immunity count) was 136 today. That is the lowest it's been yet but that is to be expected.
They told us that the steroids we are giving him would increase his appetite significantly and make him irritable. Well, both are true, and our boy has been blossoming (see the picture). This morning Elliot woke up around 4 am saying "I hung'y. I hung'y". He has been eating often throughout the day, but nothing really seems to make him happy. He has also been feeling miserable the past few days. Occasionally we can get him to break a smile (like for this picture), but not often.
Today we took Elliot for his first outpatient visit. It was a "labs only" visit. Since being diagnosed his platelet count and hemoglobin (Hgb) have been low. When we were admitted his Hgb was 8.3 and his platelet count was 18 (normal Hgb value is 10.5 - 13.5 and normal platelet count is 140-440). Initially this was because his leukemia cells "crowd out" the good cells. The chemo can also destroy these "good" cells. To treat this, over the course of his hospitalization he received 3 platelet transfusions and 2 packed red blood cell transfusions (he got one of each on Tuesday when we were discharged). We are thankful to report that both values were good today. His Hgb was 12.9 and his platelets were 126.
Elliot hasn't been feeling well for the past two days, perhaps due to the medication/chemo. Our next appointment is Tuesday for a dose of chemo. Thanks for your prayers.
2 Corinthians 1:11 You also must help us by prayer, so that many will give thanks on our behalf for the blessing granted to us through the prayers of many.
The past two weeks have probably been the most difficult of our lives, and we have shed many tears. Hearing that “your son has cancer” has a way rattling you to the core. We still can’t believe it at times but are thankful for God’s grace to get through each and every day. Through all of this, we have been incredibly blessed and awed at the outpouring of love we have received from our church, family, and friends! It would be impossible to list everyone personally, but people have visited us, called us, texted us, emailed us encouraging verses/quotes, taken pictures for us, brought us meals, books, clothes, pajamas and toys, babysat Addie, cleaned our house, etc…the list goes on and on. Thank you!!! We also appreciate all the prayers on our behalf.
God has been faithful to us thus far, and we are trusting Him to get us through this journey. We take comfort in the fact that God knew Elliot before he was born and has a plan for him. Psalm 139 talks about how God knows our frame. We rest in that He knows Elliot’s frame and every little cancer cell that is in his body and is in control. It hit us after a couple of days, that this trial was as much for us as it was for Elliot. We pray that we will be faithful in this trial, and thanks to everyone who is going on this journey alongside of us!
2 Corinthians 12: 9-10: But he said to me, "My grace is sufficient for you, for my power is made perfect in weaknes." Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me. For the sake of Christ, then, I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong.
When we originally came in, the pediatric oncologist we talked to told us that they (doctors) had learned a lot in the past 30 years on how to treat leukemia and that this was not a “doom and gloom” diagnosis anymore. Based on the established criteria, Elliot is classified as standard risk pre-B Acute Lymphoblastic Leukemia (ALL). With this type they claim a cure rate of 90%. The total treatment plan is 3 years. The first six months are supposed to be the toughest. Over the course of his treatment we were told to plan on 3-4 more inpatient hospitalizations for a type of chemo he needs to receive, but they attempt to do as much of it as possible on an outpatient basis. He most likely will have unplanned hospital admissions if he develops an infection due to being immune-suppressed.
The treatment is broken up into a few phases. The first is called induction. This lasts for about a month. He will get a total of 4 different types of chemo during this phase, as well as being on steroids. The goal is to put him in remission by the end of this phase. On the 29th day of treatment he will have another bone marrow biopsy and lumbar puncture, which will help them see how effective the treatment has been. He will require weekly lab work at the clinic. This will be done by finger stick most of the time due to infection risk associated with accessing his port.
One of the values we will keep track of is his AGC, absolute granulocyte count (also called ANC or absolute neutrophil count). This value tells us his ability to fight infection. Normally, in healthy people this value will be above 2000. When it gets under 500 he is more susceptible to infections, but they get very concerned if it gets to zero. His when we were discharged was 300.
We have finally made it home from the hospital! The past 9 days have been very busy. After getting up to the Pediatric Hematology/Oncology unit on Sunday night they started an IV on Elliot then he received a platelet transfusion. On Monday he received a transfusion of packed red blood cells. Later on Monday the lab results came back with the type of leukemia—Acute Lymphoblastic Leukemia. On Tuesday morning Elliot went to the OR and had a port placed, got a bone marrow biopsy, had a lumbar puncture, and received his first dose of chemo in the spinal fluid. He was pretty lethargic that day. On Thursday he got a dose of PEG chemo, which carries a risk of allergic reaction. He tolerated it well without any sort of allergic reaction, but didn’t feel the greatest. He also received another platelet transfusion.
On Friday, Sat, Sun, and Monday we didn’t have much going on. One of the struggles being in the hospital was that when Elliot felt well he wanted to move around (he doesn’t even care about watching TV). This was particularly difficult with him having an IV hooked up and getting IV fluids. We typically took Elliot on walks around the hospital multiple times a day in a little car they had on the unit. He loved just riding around and exploring the building. We would occasionally go outside to the “healing garden”, a nice outdoor area in the back of the hospital with flowers and a neat floating ball fountain. At one point his IV got caught on the bed and it broke the tubing. Blood began to drip out of his IV. I (dad) clamped off the tubing and the nurses quickly came in and removed the needle accessing his port and placed a new one. This was not a fun experience for him, but we are thankful it was resolved without anything more serious happening (such as his port clotting off).
On Tuesday morning he received another platelet transfusion, and then he went down to radiology and had a lumbar puncture in the morning. Later he received another blood transfusion. And in the evening we were discharged home. We will continue to give him steroids twice a day at home along with zantac (the steroids can cause upset stomach).
Many have been curious about how we discovered Elliot had Leukemia. There are a few clues that make sense of it in retrospect and a few factors that prompted us to take Elliot to the ER to be evaluated, but when we look back we can only say it was God's grace that caused the disease to be caught when it was.
The first clue is that for a few weeks Elliot had some type of rash on his chest. It wasn't very pronounced, so we thought it was due to heat rash. The second clue was an unexplained silver dollar sized bruise that appeared on the the inside of his arm on Thursday, April 14. We talked about how he could have gotten it, but never got concerned because, like any 21 month old, he tends to fall and/or hurt himself frequently.
On Saturday, April 16, Elliot woke up with a fever and was lethargic. Melissa noticed that his rash seemed to have spread over his body. When I got home from work I mentioned to Melissa that this rash looked like petechiae. I wasn't sure because it was still not very pronounced. Unknown to me, Melissa's mother told her the same thing earlier in the day. Melissa then began to look up petechiae on the internet and at one point even said "what if he has leukemia?" I dismissed the idea as unnecessary worry.
The next day, Sunday, April 17, Elliot still had a fever. Melissa called me at work and told me she was still concerned. I told her to call the pediatrician and set up an appointment for Monday. She told me about more research she had done on the internet and how she wanted to take Elliot to be evaluated somewhere today. She called the pediatrician and the nurse told her that if we suspected petechiae that we need to take him to the ER immediately. Melissa called me back and told me what she was told and I told her to come in and I would meet her. I honestly thought it was nothing to be worried about, and that taking him to the ER would be good to show nothing serious was going on.
When she got to the ER I came down and met her. I talked to the ER physician who agreed that the rash on his body did look petechial in nature. She listed off a few potential things that could cause it, such as a virus, TTP, ITP, etc. She said they would have a better idea what was going on after they drew some labs. Melissa asked her point blank, "could this be leukemia?" She responded that we would know when we got the labs back. Needless to say, her response was not the quick dismissal that we were hoping for.
About an hour later Melissa called me (I had gone back upstairs to work), and said that they had concerning lab results they wanted to share with us. I came down to the ER and the physician came in and said, “your son has leukemia.”
Psalm 139: 14-16 "I praise you, for I am fearfully and wonderfully made. Wonderful are your works; my soul knows it very well. My frame was not hidden from you, when I was being made in secret, intricately woven in the depths of the earth. Your eyes saw my unformed substance; in your book were written, every one of them, the days that were formed for me, when as yet there was none of them."
This is Elliot after he got his IV placed in the room on that first night.
