Praise God, Jeremy remains fever free.

We noticed this morning that Jeremy had some difficulty swallowing.  He also told us that he has a “tongue ouchie.”  We asked him to open his mouth, which he did without hesitation, and we noticed a small red spot on the tip of his tongue and a sore on the side.

The doctors came in this morning to do their daily examination and told us that at this stage in the treatment, it’s very common for patients to lose the desire to eat because of the mucousitis.  They said they were amazed that he’s done so well for this long as the majority of patients will start IV nutrition at around day 0.  Praise God that Jeremy was able to eat on his own for as long as he did.

The doctors plan to start IV nutrition for Jeremy tomorrow (day +6), depending on how his meals go.  They’ll also place him on around-the-clock pain medication so that he won’t be too uncomfortable.  We asked if this is standard, because to us, it seems unnecessary to start pain medication if he’s not in a tremendous amount of pain, but they tell us it’s better to be ahead of it instead of chasing it.

It’s hard to have to see Jeremy experience more intervention as his body processes the harsh treatment it’s just received, but it’s important for him to get the nutrition he needs so that he can recover as quickly as possible.  We were told that he can eat on top of the IV nutrition, so we plan to continue to offer him food, praying that he’ll eat enough that the IV nutrition can be tapered off sooner rather than later.

Praise God, the blood cultures done from day 0 continue to be negative.  Jeremy’s liver numbers continue to be fine.  It did go up slightly yesterday, likely a result of the methotrexate, but up to a concerning level.

The rest of the day was trying to give him some food and drink, but he had trouble with it.   Every bite he took stayed in his mouth for about 5 minutes before it went down and when he did swallow, it took some effort.  His mood was different today, too.  He still played and he still laughed at the things he usually laughs at, but something was just off.

It was a difficult day emotionally.  To see Jeremy’s spirits dampened reminded us of the long road he has ahead of him.  Jeremy himself knows that something is different, but he doesn’t have the experience to be able to place it and express it.   Despite the mucousitis, he actually wants to eat.  Tonight, before bed, he asked for some milk and Cherrios.  Each bite he swallowed made him pause and think, as if he knows that something isn’t right.  We ask him how he’s feeling or if it hurts when he eats and I’m almost positive that I can see him start to frown as he tells us, “My good.”  It’s one of the hardest things to see – Jeremy putting on his tough face because he doesn’t know what else to do with all this.

He’s also started to become more attached to Alice, possibly because he was feeling so crummy today.  He’ll ask Alice to put Matty down so that she can come and carry him, or he’ll say, “Mommy carry Jeremy and Daddy carry 弟弟.”  It’s a difficult position for Alice, having to split her time between the two boys.  She doesn’t want Jeremy to feel like we aren’t there for him when he needs us, but she also want to give Matty the attention that he needs.  It’s a struggle to find the proper balance and we often feel guilty for “abandoning” one to tend to the other.

We pray with Jeremy often and he prays himself before mealtimes, but it seems to be getting repetitive for him.  Still, we are trying to teach him that prayer is important and that God hears our prayers.  Jeremy’s prayer requests tonight were for his tongue and belly to feel better, to go home, and to go to Disneyland.  The tears come easy as he shares these requests with us.  He saw Alice sad and asked, “Need tissue?”  He’s comforted her in the past when they talk about Disneyland by saying, “It’s ok, Momma.  One day.”

“Then your light will break forth like the dawn, and your healing will quickly appear; then your righteousness will go before you, and the glory of the Lord will be your rear guard.” (Isaiah 58: 8)

Praise God:

• for Him, ever present beside us
• Jeremy is fever free
• Jeremy continued to play, despite the uncomfortable onset of mucousitis
• Jeremy was able to avoid IV nutrition for much longer than anyone expected
• Jeremy’s liver numbers are ok
• the blood cultures done from day 0 remain negative

Please pray:

• that God would continue to use this situation for His glory
• that we would be obedient to God’s plans for this situation
• that we would continue to cast our worries and fears on the Lord, that we would fix our eyes on Him
• that we would continue to be reminded of God’s greatness and provision, that we would wait on Him, and that we would not allow fear to creep in
• that we would rejoice in the moments that God gives us
• that God would provide full and complete healing and total health for Jeremy
• that God would protect Jeremy from any scrapes or bumps
• that Alice and I would not get sick in order to care for our family
• that Matty would nurse easily and sleep well
• that God would give us wisdom in teaching Jeremy in the hospital environment
• that Jeremy would maintain the desire to pray
• that we would extend Jeremy an extra portion of patience and grace as we try to care for him with the added hyperactivity
• that God would give us the proper balance in caring for Jeremy and Matty
• that we would adjust well to the new challenges of being in the BMT unit, with all it’s necessary rules and regulations

Please pray for the conditioning chemo regimen:

• that it would be effective in destroying any lingering cancer cells
• that pain caused by the mucousitis would subside
• that Jeremy’s spirits would improve, that he would have the desire to play
• that Jeremy would continue to eat and drink and that he would maintain his weight
• that Jeremy would not encounter any fevers during the neutropenic period
• that Jeremy would not have any brain, liver, lung, kidney, pancreatic, heart, or any other type of organ damage as a result of the chemo and antibiotics
• that Jeremy would not encounter any c-diff as a result of the antibiotics
• that Jeremy’s liver numbers would continue to stabilize and the chemotherapies would not cause additional damage to his liver
• that Jeremy would not need to be admitted to the PICU at any point during the chemo regimen or bone marrow transplant
• that Alice, Matthew, and myself would not be harmed by the chemo we might come in contact with when changing Jeremy’s diapers

Please pray for the bone marrow transplant:

• that the donor cells would engraft, that Jeremy’s body would not reject the transplant
• that Jeremy would not encounter any graft vs. host disease, acute or chronic, especially anything severe or fatal
• that God would protect Jeremy’s skin, kidneys, liver, stomach, and intestines from both the donor cells and the medications used to treat and prevent gvhd
• that the mismatched blood type would not cause any issues for Jeremy
• that Jeremy would not experience any severe or dangerous infections from the transplant
• that the prophylactic antibiotics would be effective in treating the bacterium in the donor marrow

Please pray for our family and neighbors:

• for our neighbors who are also enduring trials of their own, that they would find their comfort in Christ
• for our parents – that they would have rest and place their trust in Jesus and receive His comfort
• that we would be witnesses of God’s love and grace to our neighbors and the medical staff