After chemo, Samuel will have virtually no white blood cells, red blood cells, or platelets left. He also won't have the bad leukemia cells either, and that's the goal. He can be given platelets and red blood cells (hemoglobin), but he will have to make his own white blood cells. While he has a low white blood cell count, his body will not have the ability to fight off any infection, so he will have to stay in the hospital where he is monitored closely and can be administered an antibiotic quickly should the need arise. Once his blood count numbers rise to a certain level, he will be able to come home. This should be anywhere from 21-28 days after the start of chemo. Then he can be home for 1-2 weeks before the process will probably begin again.
Because of the unique form of leukemia that Samuel has, the full treatment plan is an unknown. At the end of this first cycle, he will be reevaluated and a decision will be made as to the next step. So, there is no way to plan ahead. If God wants to teach us a lesson on relying on him day by day, he sure has found a way to do it! So, we do not know what the future holds, but we do know the One who holds the future.
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God is good and He is faithful through this. Barry and I have discussed how this road is hard, really hard, but that we see God through this. He is showing Himself in so many ways. We are confident that He can use even this for His good.
I am still confident that God is with Samuel and will continue to walk with him through this. He is by our sides and upholding us through this. We still have much to be thankful for.
"May the God of your hope so fill you with all joy and peace in believing [through the experience of your faith] that by the power of the Holy Spirit you may abound and be overflowing (bubbling over) with hope." Romans 15:13
- The obvious one, healing for Samuel
- Samuel's white blood cell count is at rock bottom and will continue to be that way for quite some time and therefore he cannot fight off any infection. So, he cannot be exposed to sickness. Prayers requested for God to supernaturally protect Barry and I so that we remain healthy and we can continue to take turns being with Samuel.
- That Samuel's side effects from the chemo continue to be minimal. Obviously, we want to keep him as a happy, fun-loving 5 year old boy who is not in great pain.
- Safe travel for our family as we commute back and forth to Indianapolis at least a couple of times a week.
- God's hand of protection upon the rest of the family at home. And also His provision to make up for the fact that either mom or dad are not home with them.
Well, it has been a more challenging week. I shared that Samuel spiked a fever late Tuesday night. He is still battling the fever. His temperature is fluctuating between 99 and 103 degrees. The doctors are not sure why, but tell me this is not unexpected. Most kids undergoing leukemia treatment get a fever at some point and it could be caused by many things. He is on two antibiotics now in case it is an infection because his body has no infection fighting power on its own right now.
Besides the fever, Samuel is fighting nausea, no appetite, and no energy. We have had so many good days, that I was getting rather spoiled. This is draining. Of course, now is also when his hair starts to fall out. We had been assured that with the chemo he received, this would happen, but it is not a fun process. Samuel doesn’t want to talk about it. That is how he has been dealing with all of the many aspects of the leukemia and all that has been happening to him. He is trying his best to ignore the hair loss, but he is going to have to come to terms with it soon.
Our week started differently. Samuel was in good spirits and we had a very special time of praying over Samuel for his complete healing with some amazing prayer warriors from church. I know that God is way bigger than leukemia and He loves this little boy even more than us. I also know that God could heal Samuel instantly. So, if He does not, there is a reason and a purpose. I may not understand that, but what I can do is trust Him.
Right now we are waiting. Waiting for Samuel’s little body to kick back into making blood cells, waiting for him to kick this fever and start feeling better, waiting for him to be able to come back home and join our family. Ultimately, he is in God’s hands, so I guess we are waiting on Him.“I remain confident of this: I will see the goodness of the Lord in the land of the living. Wait for the Lord; be strong and take heart and wait for the Lord.” Psalm 27:13-14
Today was a swap day for Barry and I. I had been at Riley since Monday and Barry had been home. He brought the kids with him today for a visit as most of them had not seen Samuel in person since he had gone down to Riley three weeks ago. Thankfully, Samuel had been without a fever since the previous evening and was feeling pretty good. He had gone nearly a whole day without any fever, but unfortunately this afternoon it returned. That was the fifth day with a fever which earned him more blood tests and a CT scan. The little guy was a trooper and laid still for his scan and he was soon back to playing with his sibs.
On our way home, I got a call to tell me that the CT scan showed that Samuel has a ruptured appendix. Quite frankly, this is a lot for a parent’s heart to handle and it overwhelms me. I do not understand why this is all happening to Samuel. Treatment for appendicitis is surgery and/or antibiotics. Because of the fact that Samuel has no infection fighting ability at this time, surgery is not a good option for him as it may cause too many additional problems. The doctors have decided to use antibiotics and monitor him closely. The really amazing thing in all of this is the fact that the antibiotic of choice for this is the same one that Samuel has been on since he entered the hospital. So, basically, he has already been getting the right treatment for this all along. Also, he is not having pain as would be expected. The doctors keep poking around on him asking if he hurts and he keeps telling them that it doesn't. He had even spent the day having fun with the family. These things assure me of God’s goodness even in the midst of the bad. Thank you, God!
So, we are still waiting and praying. We are thankful that so many of you have decided to join us.
This is our 31st day in the hospital. I say it is “ours” because although Samuel is the one admitted, we all feel involved and affected. Samuel has been done with chemo for over 2 weeks. It is the 11th day that Samuel has been fighting fevers which are most likely due to his ruptured appendix, but no one knows for certain. We are still just watching and waiting for his little body to rebound. It feels like we have been waiting for a very long time, watching him struggle with lack of appetite, nausea, fever, total lack of energy, discomfort, and missing his family and home.
Now Samuel has three teams of doctors examining him every day. The regular team who are overseeing his leukemia treatment, a surgical team who are watching his appendicitis, and now an infectious disease team who are monitoring his fevers and determining if there is another underlying cause for them. Today he is scheduled for another CT scan. They will be looking for an abscess in his abdomen that may have formed (due to the appendicitis). Even if he has one, it may not be visible because he doesn’t have enough white blood cells to make it inflamed. We may not get the answers we want and have to continue watching and waiting. If they do find something, then they will discuss the best course of action to deal with it with the lowest risk of infection for Samuel.
There have been some hard days this week. When Samuel is feeling awful, it is hard to keep a positive outlook. Thanksgiving Day was rough. Samuel and I were apart from the family and he was spiking fevers of over 104 degrees and, as you can imagine, did not even want to get out of bed and was generally feeling pretty bad. So, ironically, on the day we reflect on thankfulness, I was not feeling too thankful. Instead, I stood with my toes on the edge of a big giant pity party ready to dive in headfirst.
Samuel was diagnosed with leukemia on October 30th. On November 2nd, I wrote in my journal, “Lord, let me have the courage to thank you in the hard times.” I have had to repeat this prayer quite a few times in the past few weeks when things have felt really hard. I do not want to walk down this road that we are on. I do not want to see my son suffer. I do not want my family to be separated every day. So, can I thank God for these very things? How do I thank God for the fact that my son has a life-threatening illness? How do I thank God for his fever of 104.5 or his ruptured appendix? How? I guess it has to do with trust. Do I trust God in this situation? Do I still believe that He is in control? My answer would have to be “Yes.” I do trust Him. He is bigger than this situation and I believe He has a purpose in it. I have to. I’m sure some day, He will let me see and understand that purpose. But, for now, all I can do is trust Him and that will allow me to choose to thank Him even in these circumstances.
“Because of the Lord’s great love we are not consumed, for His compassions never fail. They are new every morning; great is Your faithfulness. I say to myself, “The Lord is my portion; therefore I will wait for Him. “ Lamentations 3:22-24
I really, really want to write a happy update - the one where Samuel has turned a corner, is doing awesome and on his way home. I have hope that I will get to write that update someday, but unfortunately, it won’t be today.
Our week started right off rather stressful. At 4:00am Monday morning, Samuel’s blood pressure and heart rate dropped. It wasn’t critically low, but a marked change that gave his nurse cause for concern considering all that is going on in his body. She alerted the doctor on duty and it was decided to call in an emergency team of E.R. doctors, cardiologists and nurses to assess him. Therefore, I was awoken by at least 8 people in our hospital room and just as many or more outside in the hall. Even a chaplain came in to speak with me. Samuel was hard to arouse even with all this activity around him which was a little concerning. It was decided to give him a blast of fluids quickly by IV to try to raise his blood pressure. It took two tries, but thankfully, both his blood pressure and his heart rate came back up. The next step would have been to send him to I.C.U. I had put out a request to my prayer warrior friends on Facebook and they came through. I have no doubt that there is power in prayer. Needless to say, the whole event was pretty nerve wracking for a mama.
Samuel was scheduled for a procedure on Monday to draw a bone marrow sample, do a spinal tap to get a spinal fluid sample and also give him a dose of chemo in the spinal column. Fortunately, he had stabilized enough by noon that this could still happen and he came through it very well.
Yesterday, Samuel was started on TPN which is IV nutrition. He has struggled to eat and to keep what food he does eat in him; therefore, he is losing weight and strength. I am hopeful that this will help.
We got Samuel's bone marrow and spinal tap test results back today. The good news is that there are no leukemia cells in his spinal column. Unfortunately, his bone marrow results are not what we had hoped for. Ideally he would be in remission with no leukemia cells at this point. However, he has 16% blast cells that look the same as the leukemia cells that he originally had. So, he is not in remission. The doctors are going to be discussing him a lot right now to try and figure out what the next step should be. Because of the rare form of leukemia that he has, there is not a definite treatment protocol. His fevers that he continues to have could be caused by the leukemia or his appendicitis. They may decide to do another round of chemo before his white blood cell count comes back up. The timing, what type of chemo and how the appendicitis affects everything are all in question.
I don’t even know what to say about all of this. I’m heart-broken. It seems that this path keeps getting harder and steeper with each turn. And here we are walking it blindfolded, not knowing what hard thing the next step will bring. I thank God that Jesus, the Prince of Peace, walks beside me, even carries me when my legs have gone weak.
I still believe that God is in control of all of this. All I can do at this point is look at that little boy who is weak and exhausted and still say, “Lord, I trust You.”
“ Even when walking through the dark valley of death I will not be afraid, for you are close beside me, guarding, guiding all the way.” Psalm 23:4
Last week I watched my little boy seem to get weaker by the day. I think his lack of eating had finally caught up with him. He has had no energy or strength, been sleeping 12-16 hours a day, has no desire to eat and no interest in even getting out of bed. Thankfully, he was started on TPN which is IV nutrition last Tuesday night. Barry and I swapped for the weekend on Friday and when I came back on Sunday, Samuel seemed perkier and was even interested in eating a little bit. Even though he has a lot of ground to regain, I am hopeful about this.
We were disheartened with Samuel’s bone marrow test results last week. We had been given the expectation that he would be in (temporary) remission at this point. To find out that he wasn’t, along with his ruptured appendix, his continuing fevers, and his weakened state was quite concerning. Samuel’s body has not rebounded and started making many blood cells yet. We were told that his white blood cell count should start rising between day 21 and 28 of treatment. Today is day 36 and he is still virtually at zero. The fact that his body is trying to heal a ruptured appendix, deal with fevers daily and has not been getting much fuel has probably contributed to that.
The doctors have come up with a tentative plan for the next step in Samuel’s treatment. They would like to wait for his white blood cells count to start coming up and then do another round of chemo like the first one he had. This is an AML leukemia treatment plan. The type of leukemia that Samuel has (BAL) is a combination of AML and ALL which are the two common types of childhood leukemia. They have chosen to treat the AML side of things because it is the more aggressive type. Ideally, the next round of chemo would not be started until Samuel’s white blood cell counts come up. Hopefully, with white blood cells, his body could repair his appendicitis and clean up the infection from that and take care of his fever. Then he should be strong and ready for the next round. However, if the leukemia starts rallying first, they will need to start chemo sooner. The plan is to check his bone marrow again this week and make sure the leukemia is not having a party in there and trying to take over.
So, for now, we are still waiting and learning patience. Praying God uses this time to rebuild and renew Samuel’s tired body. A hard thing that we have had to come to terms with is that Samuel will not be able to come home before his next round of chemo as we had hoped. That means that he will be spending Christmas here at Riley Hospital. So, I have been mourning the loss of the Christmas celebration of my expectations. Christmas will look a lot different this year with traditions having to be adapted and not all of us together for much of it all. The most important thing about Christmas will still remain. No matter what, we can still remember how God sent Jesus to rescue a fallen world. I am getting a new perspective of how really fallen our world is - a world where there is sickness and sadness. So thankful that my hope is not here in this world, but in Jesus our Savior! That is worth celebrating at Christmas no matter what the circumstances may be.
Complete and total healing for Samuel
Samuel’s body to kick into gear and start making GOOD blood cells.
Samuel’s body to NOT produce leukemia cells
Samuel’s body to strengthen and heal and regain weight that he has lost.
Wisdom for Samuel’s doctors and nurses to know exactly what care and treatment he needs.
Supernatural protection against illness and injury for our entire family.
Samuel had his bone marrow drawn on Tuesday. Although the official test results are not in, the doctor has taken a preliminary look at his bone marrow and it did not look like there were any more leukemia cells than there were last week. This is good. This is what we were praying for. It will buy him some time to rebuild his body, gain back weight that he has lost, start making some white blood cells and hopefully heal his appendicitis. Now, we are praying for his body to be strengthened.
Yesterday was a better day for Samuel. He had more energy than he has had in a long time. He got out of his room, played some air hockey, and was generally more active. It was so good to see and gives me much more hope and encouragement.
It’s been officially six weeks that Samuel has been inpatient in the hospital. Last night I sat here and reviewed so much of what has gone on in that time:
2 hospital admissions
2 leukemia diagnoses
10 days of chemo
21 days of fever
21 blood cultures
3 bone marrow aspiration procedures
2 lumbar punctures with chemo
2 CT scans
1 surgery to place central venous line
1 appendix rupture
Countless blood tests
42 days of IV antibiotics
8 days of TPN (IV nutrition)
That looks pretty daunting and to be honest this has not been easy. At all. However, there is SO much more I really need to list:
So much loving support from friends and family
Many meals lovingly prepared and brought to feed my family
Generous financial support that just humbles us
More faithful prayer warriors than I would have ever imagined lifting our family up to God.
Unexplainable peace and even joy despite these circumstances.
God is good! We have undeniably seen God in this process. We know that He is right here, walking this path right along with us. There is much to be thankful for within these circumstances.
Still trusting in His mighty hand,
I pray it is a blessing to you.
Still trusting in His mighty hand,
Site created on November 4, 2014
So, one day life is “normal” and the next day you get a phone call telling you to take your child to the ER for a blood transfusion. We had no idea how our lives would change on that day.
Our son, Samuel, is five years old. He the sixth child in a family of seven children. He is active like most five year olds, so when we noticed a bunch of bruises on him, we didn’t think too much of it. However, when a tiny sore on his tongue became nasty and infected looking in just a couple of days, I decided to take him to the doctor. I pointed out the bruising and she thought it would be a good idea to go to the lab and have some blood work done.
The next day started normal. I was reading aloud to the kids when I received a phone call from my doctor’s office. The nurse told me that Samuel had a critically low platelet count and that I should take him immediately to the ER for a blood transfusion. (They were at 2.)
Barry came home from work and we grabbed up Samuel and took him to Lutheran Hospital. We were told in the ER that Samuel was to be directly admitted. We bypassed registration and were immediately taken up to Pediatrics. I had this horrible sense as we were walking in that he would not be leaving the hospital for a long time.
A doctor came in to speak with us. The rest of Samuel’s blood work revealed that not only were his platelets low, but also his hemoglobin and white blood cell counts. The doctor suspected leukemia. My poor son who had never had blood drawn before was subjected to many needle pokes. There was more testing, an IV, and a transfusion of both platelets and hemoglobin.
The next day, Barry and I were led into a conference room with a group of doctors and nurses while a Child Life Specialist hung out with Samuel in his room. Both of us knew that this could not be good news. We were told that tests confirmed that Samuel had leukemia and it was the less common AML type. This type requires more intense treatment and is done mostly inpatient. They told us they had scheduled us at Riley Hospital the next morning for a bone marrow draw where they would be able to better pinpoint the type with more detail and come up with a treatment plan.
At Riley, the leukemia was confirmed, but with further testing it was discovered that he has an even rarer form of leukemia. There are two types of leukemia most often seen in children. The most common type is ALL (Acute lymphocytic leukemia), then there is AML (Acute myeloid leukemia). Samuel has a combination with both, biphenotypic acute leukemia (BAL). It is rare in adults and even less common in children. The odds of getting struck by lightning are higher than getting this.
You can imagine that Barry and I were reeling from the shock. This diagnosis and the treatment to fight it greatly affects our family in more ways than I can even count. However, what is constantly in my mind is that my God is way bigger than leukemia AND He loves this little one even more than we do. So, if he is putting him and all of us on this path, he has a purpose and He will use it for good.
“And we know that in all things God works for the good of those who love him” Romans 8:28
We don’t understand, but we can trust Him. The big picture looks overwhelming, but we can take baby steps and hold the hand of Him who has the strength to walk us through this.
“ I am not saying this because I am in need, for I have learned to be content whatever the circumstances. I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. I can do all this through him who gives me strength.” Phil. 4:11-13
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